Re: Frustrated-Vent-Read at your own risk

[Guest guest]

Hugs ! As someone who has been hurting, fighting, and crying because of

juvenile arthritis for 36 years let me first say your thoughts are very, very

normal. I HATE THIS DISEASE! I hate what it has done and continues to do to

me, my body, my emotions and even my family. It began robbing me at the age

of 4 and the age of 40 it still does. I hate when I am forced to see myself in

a mirror. I hate when I feel the slightest symptom of what could be a return

of the autoimmune hemolytic anemia that almost stole my life and I would

never have had if I didn't have JRA! I hate the unknown...will I be able to

move

about tomorrow, will I be able to be active in my kids lives, will I be able

to clean my home and play with my pup, will my stomach just disintegrate

from all the meds, will I survive my next surgery and as you know my friend the

list goes on and on and on...I have been so blessed to have my miracle

children but I am not alone, others have been successful with children as well

and

please remember that pregnancy is not the only way to have miracle children.

There are many children who need the love, support and encouragement you have

to offer in foster homes.

Its ok to have those days or even weeks but you already know we have

arthritis, arthritis does not have us! Remind yourself that you are an

inspiration

to the parents and the children who will follow you in the arthritis world

and too the older young adults like myself who see you persevere even when the

bad days creep into your life.

Also know, everyone here HATES this disease equally but that also we are all

here for each other equally!

Keep your chin high and hang tight and hang tough!

hugs and smiles!

Donna

[Guest guest]

, I can TOTALLY understand!

I am 36 but had RA since I was 3. I went through a C section to have my

daughter and my RA pain at times has been 100 times worse than any Labor/C

section pains. I went through (and still do) wanting to be normal, but not

remembering if i ever was.

I am so sorry you are feeling this way...and I wish I could " poof " fix it and

make it go away. I am not sure1 day would be worth it...you would always

just want 1 more day...and 1 more etc.

Life is so not easy for kids (young adults) with RA - we have choices and

decisions that nobody else seesm to have to make and things to consider that

nobody else seems to know (or even sometimes care).

I am 36 - I made it this far - I know it won't be easy but YOU CAN TOO!

I am married - have a 5 yr old daughter - artificial hand joints - fused

ankles - and will need eventually artificial knees and hips - but take it 1 day

at

a time. GOD WON'T EVER GIVE YOU MORE THAN YOU CAN HANDLE!

Everything happens for a reason - although we don't always know why (OR even

care sometimes). Flare days (weeks) just help us to appreciate more the NON

flares. WE are so much tougher than anybody else (because of and in spite of

" arthur " ).

Please, know my thoughts and prayers are with you.

ARTHUR is NEVER easy...but I like to think I would NOT be who I am without it!

Take care and try to keep the spirits up - venting DOES help (I know)!

love, prayers and blessings,

[Guest guest]

Oh hun I'm so sorry your feeling so bad. Your right you should be having the

time of your life. I hope you get some relief soon. {{{{{{{HUGS}}}}}}}

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Healthy Thank God}

18 {Asthma}

~~~~~~~~~~~~~~~~

-------------- Original message --------------

From: Salvucci <lisa_salvucci@...>

I am feeling very frustrated about having this disease. I think a majority of

the time I don't even think about it as having a disease because I have been

living with it for so long that I don't think I even remember a time when I

didn't feel this way. But then there are days like this (sometimes weeks like

this) where I think to myself I have already been living with this for so long

and there is no end in sight and its soo annoying! I feel so lucky to so far not

need any type of replacement, but at the same time its frustrating that nothing

has really changed. I'm going through a flare right now.. my hips, knees, and

spine are killing me and like a true spondy its affecting my feet in the worst

possible way. The other morning while walking to the bathroom in the morning I

was in tears my feet and knees hurt so bad that it was excruciating to walk to

the bathroom..I'm 21 I should be past that whole crying cause it hurts thing..

I'm not a big wimp when it comes to pain either.. I had

abdominal surgery and was up walking a few hours later despite the fact most

people dont get up for at least 24 hrs.. but this pain made me cry.. The part

that is bugging me most is I take all of these meds that have these god awful

side affects if I ever want to get pregnant I have to be off Arava for 2-3

years.. granted I'm not trying to get pregnant anytime soon..but that thought is

scary..and then there is Remicade with all its scary side affects and its like I

wouldnt care if I felt like I was getting a lot out of it, but I don't feel that

way.. I still feel like crap.. so why am I risking my life and future with these

meds if they aren't doing a lot.. And like college should be the best time of my

life I'm 21.. and its like I cant even go out and do anything irresponsible

(like drink more then one drink per week cause apparently my liver will shut

down) its not like I really want to do it.. I just want the option.. Arthritis

has affected every part of my life and I'm not too

pleased about it.. even when it came to picking colleges I had to go with the

close ones so that I can come back every 8 weeks for my rheumy/remicade

appointments.. I sometimes just wish that I had like a day to be disease free..

just a small break.. I don't remember what it is like to not have pain or feel

bad.. thats all I want... just one day..

(JAS, 21) J.A.S= Juvenile Arthritis Sucks.. not what it stands for but

the way I am feeling right now.. the acronym might as well be the same!

[Guest guest]

((((((((LISA)))))))))

My dear, you are due a vent. You are so strong ALL the time, but

sometimes you just have to let it all out. I'm so glad that you are here

and we can support you.

I think you are an incredible young woman and I know that you will

triumph over this disease. I also know that we all love you here and we

will continue to support you and pray for you. I wish I could come visit

and give you a day of pampering or something. I know that it wouldn't be

a fix, but maybe just a get away from all the pressures you are under.

Have you talked to your mom? For me, Mom was always the place I could go

for comfort and huge hugs.

I don't know what to say, but I am so very sorry for your frustration and

pain. Are you due to go back to the doctor anytime soon?

Keep us posted, dear . We care so very much about you.

Lots of love,

and Rob 16 JAS (I'll have to tell him it means JUVENILE ARTHRITIS

SUCKS!)

On Wed, 8 Feb 2006 03:44:18 -0800 (PST) Salvucci

<lisa_salvucci@...> writes:

I am feeling very frustrated about having this disease. I think a

majority of the time I don't even think about it as having a disease

because I have been living with it for so long that I don't think I even

remember a time when I didn't feel this way. But then there are days like

this (sometimes weeks like this) where I think to myself I have already

been living with this for so long and there is no end in sight and its

soo annoying! I feel so lucky to so far not need any type of replacement,

but at the same time its frustrating that nothing has really changed. I'm

going through a flare right now.. my hips, knees, and spine are killing

me and like a true spondy its affecting my feet in the worst possible

way. The other morning while walking to the bathroom in the morning I was

in tears my feet and knees hurt so bad that it was excruciating to walk

to the bathroom..I'm 21 I should be past that whole crying cause it hurts

thing.. I'm not a big wimp when it comes to pain either.. I had

abdominal surgery and was up walking a few hours later despite the fact

most people dont get up for at least 24 hrs.. but this pain made me cry..

The part that is bugging me most is I take all of these meds that have

these god awful side affects if I ever want to get pregnant I have to be

off Arava for 2-3 years.. granted I'm not trying to get pregnant anytime

soon..but that thought is scary..and then there is Remicade with all its

scary side affects and its like I wouldnt care if I felt like I was

getting a lot out of it, but I don't feel that way.. I still feel like

crap.. so why am I risking my life and future with these meds if they

aren't doing a lot.. And like college should be the best time of my life

I'm 21.. and its like I cant even go out and do anything irresponsible

(like drink more then one drink per week cause apparently my liver will

shut down) its not like I really want to do it.. I just want the option..

Arthritis has affected every part of my life and I'm not too

pleased about it.. even when it came to picking colleges I had to go with

the close ones so that I can come back every 8 weeks for my

rheumy/remicade appointments.. I sometimes just wish that I had like a

day to be disease free.. just a small break.. I don't remember what it is

like to not have pain or feel bad.. thats all I want... just one day..

(JAS, 21) J.A.S= Juvenile Arthritis Sucks.. not what it stands for

but the way I am feeling right now.. the acronym might as well be the

same!

[Guest guest]

Hugs . I am sorry you are feeling this way. I can only imagine the

frustration and the not being able to do what you want, when you want. I

have a daughter who's 22 and I know what she can do, and she is very

lucky to not have anything like meds and drs to consider. I wish that

for you. But I know that for whatever reason, a different path was given

you. Not chosen by you, yet given to you. I am sorry. Please know that

you are in my thoughts and prayers. I also give you a lot of credit for

sticking with the meds and things to try and improve your life. I know

feels the same frustration, but he does not take care of himself

as well as you do. You are at least mature enough to realize what you

must do to try to help yourself. I know this does not help much, but I

wanted you to know I am thinking of you, Hugs, Michele ( 18,

spondy)

[Guest guest]

LIsa vent. I too need to vent. I havent' been feeling good at all and now I have

to go out and find a new place for me and my two children to live as he is

selling this house me and the chyildren have lived in for 16 years. I guess it's

time for flairs and venting.

Hugs; ginger

snooksmama@... wrote:

((((((((LISA)))))))))

My dear, you are due a vent. You are so strong ALL the time, but

sometimes you just have to let it all out. I'm so glad that you are here

and we can support you.

I think you are an incredible young woman and I know that you will

triumph over this disease. I also know that we all love you here and we

will continue to support you and pray for you. I wish I could come visit

and give you a day of pampering or something. I know that it wouldn't be

a fix, but maybe just a get away from all the pressures you are under.

Have you talked to your mom? For me, Mom was always the place I could go

for comfort and huge hugs.

I don't know what to say, but I am so very sorry for your frustration and

pain. Are you due to go back to the doctor anytime soon?

Keep us posted, dear . We care so very much about you.

Lots of love,

and Rob 16 JAS (I'll have to tell him it means JUVENILE ARTHRITIS

SUCKS!)

On Wed, 8 Feb 2006 03:44:18 -0800 (PST) Salvucci

<lisa_salvucci@...> writes:

I am feeling very frustrated about having this disease. I think a

majority of the time I don't even think about it as having a disease

because I have been living with it for so long that I don't think I even

remember a time when I didn't feel this way. But then there are days like

this (sometimes weeks like this) where I think to myself I have already

been living with this for so long and there is no end in sight and its

soo annoying! I feel so lucky to so far not need any type of replacement,

but at the same time its frustrating that nothing has really changed. I'm

going through a flare right now.. my hips, knees, and spine are killing

me and like a true spondy its affecting my feet in the worst possible

way. The other morning while walking to the bathroom in the morning I was

in tears my feet and knees hurt so bad that it was excruciating to walk

to the bathroom..I'm 21 I should be past that whole crying cause it hurts

thing.. I'm not a big wimp when it comes to pain either.. I had

abdominal surgery and was up walking a few hours later despite the fact

most people dont get up for at least 24 hrs.. but this pain made me cry..

The part that is bugging me most is I take all of these meds that have

these god awful side affects if I ever want to get pregnant I have to be

off Arava for 2-3 years.. granted I'm not trying to get pregnant anytime

soon..but that thought is scary..and then there is Remicade with all its

scary side affects and its like I wouldnt care if I felt like I was

getting a lot out of it, but I don't feel that way.. I still feel like

crap.. so why am I risking my life and future with these meds if they

aren't doing a lot.. And like college should be the best time of my life

I'm 21.. and its like I cant even go out and do anything irresponsible

(like drink more then one drink per week cause apparently my liver will

shut down) its not like I really want to do it.. I just want the option..

Arthritis has affected every part of my life and I'm not too

pleased about it.. even when it came to picking colleges I had to go with

the close ones so that I can come back every 8 weeks for my

rheumy/remicade appointments.. I sometimes just wish that I had like a

day to be disease free.. just a small break.. I don't remember what it is

like to not have pain or feel bad.. thats all I want... just one day..

(JAS, 21) J.A.S= Juvenile Arthritis Sucks.. not what it stands for

but the way I am feeling right now.. the acronym might as well be the

same!

[Guest guest]

Oh how we feel for you. It sounds like this vent is exactly what

congress needs to hear at the upcoming Summit. Give Liz or someone

who's going permission to print it and read it to congress!! I pray

that you get at least one good day very soon and many more in your

future.

Hugs,

Stacia and Hunter 9 systemic, uveitis

[Guest guest]

,

I relate to so much of what you're saying and I totally agree with it

too, this commonality we share because of this disease even though I am

nearly old enough to be your grandpa!

Yes JAS does suck! and it has rob us of so much in life and will continue

to cheat usof other things to come.

Having lived with it for 37 years now, I too can't remember what it was

like to be Arthritis free. like a muted graying movie reel I see my life

at the time in it when, I was not yet diagnosed or had even had my very

first flare. I know it to be factual because I've seen photo's of me as

a young boy and without the joint deformities, unencumbered by pain and

loss of range of motion. A time before every appendage of my body was

affected by this DAMN'D disease.

It has robbed so many of so much in their lives, adventure, romance,

career and too often the feeling of fitting in. Belonging to and being

accepted as viable and productive member of society as anyone else,

judged for who we are and what we can do, rather than how we outwardly

appear, because of this disease and what it can do to the physical

appearance of one.

I won't say it gets better as life goes on because with or without

Arthritis or any life altering condition, Life is life! it's neither is

or isn't, it just is.

We make of it as we want it to be or hope for it to become, dealing with

the obstacles put before us as we run the course.

You have every right to feel the way you do, and you need to feel that

way on occasion, in order to maintain your sanity and continue to deal

with it.

But my sweet young girl you are already ahead of the whole thing and so

far ahead of so many, 'normal people' who don't have to live life with

some type of physical condition. You are an inspiration for all to

emulate. A beautiful young 21 year old college woman, steaming down the

river of life. Course set and destination ahead not allowing this disease

stop you, though it has caused a reduction in speed. None the less you

venture forward on your journey, seeking and grabbing the brass ring of

accomplishment.

Many hugs and much admiration for you .

Rusty

[Guest guest]

,

You know there are just some days in your life that you feel like

you want to take a day off from some of the daily struggles that are

being thrown your way! (and for you those health struggles just seem

to be mounting lately)

Perhaps, you have been a bit overwhelmed dealing with this flare for

so long and also trying to keep up with your studies and considering

which university to attend.

There are times that you question the treatment and feel discouraged

by the lack of improvement.

But, you my dear are a fighter. And while you may have a day that

you feel like tossing in the towel I know that you will dust

yourself off and keep plugging away at achieving all of your goals

and dreams.

Your worries also change as you get older. When you were younger, I

imagine you were focused on a treatment plan that would get you out

of pain. Now, that you are older there is greater concern given to

your long term health and side effects of treatment that could

affect pregnancy etc...I am glad that there are several jra vets on

this list that can provide you with some encouragement in this area.

Hang in there sweetie! I am praying that this pain you are having

will disipate and that healing will take place all the way from your

toes up to your lungs!

Please keep us posted on how things are going...I always try to stop

by and check messages when I can and like to see how your doing!

Blessings,

(aundrea 10 systemic jra)---

In , Salvucci <lisa_salvucci@...>

wrote:

>

> I am feeling very frustrated about having this disease. I think a

majority of the time I don't even think about it as having a disease

because I have been living with it for so long that I don't think I

even remember a time when I didn't feel this way. But then there are

days like this (sometimes weeks like this) where I think to myself I

have already been living with this for so long and there is no end

in sight and its soo annoying! I feel so lucky to so far not need

any type of replacement, but at the same time its frustrating that

nothing has really changed. I'm going through a flare right now.. my

hips, knees, and spine are killing me and like a true spondy its

affecting my feet in the worst possible way. The other morning while

walking to the bathroom in the morning I was in tears my feet and

knees hurt so bad that it was excruciating to walk to the

bathroom..I'm 21 I should be past that whole crying cause it hurts

thing.. I'm not a big wimp when it comes to pain either.. I had

> abdominal surgery and was up walking a few hours later despite

the fact most people dont get up for at least 24 hrs.. but this pain

made me cry.. The part that is bugging me most is I take all of

these meds that have these god awful side affects if I ever want to

get pregnant I have to be off Arava for 2-3 years.. granted I'm not

trying to get pregnant anytime soon..but that thought is scary..and

then there is Remicade with all its scary side affects and its like

I wouldnt care if I felt like I was getting a lot out of it, but I

don't feel that way.. I still feel like crap.. so why am I risking

my life and future with these meds if they aren't doing a lot.. And

like college should be the best time of my life I'm 21.. and its

like I cant even go out and do anything irresponsible (like drink

more then one drink per week cause apparently my liver will shut

down) its not like I really want to do it.. I just want the option..

Arthritis has affected every part of my life and I'm not too

> pleased about it.. even when it came to picking colleges I had to

go with the close ones so that I can come back every 8 weeks for my

rheumy/remicade appointments.. I sometimes just wish that I had like

a day to be disease free.. just a small break.. I don't remember

what it is like to not have pain or feel bad.. thats all I want...

just one day..

>

> (JAS, 21) J.A.S= Juvenile Arthritis Sucks.. not what it

stands for but the way I am feeling right now.. the acronym might as

well be the same!

>

>

>

[Guest guest]

Thank you Michele for the kind words, its hard sometimes to see all my friends

out there doing everything and anything they want, and its like I know I can too

but sometimes it just takes so much more.. and that is frustrating. As for Chris

he will learn eventually, I think we all go through the stage where we think if

you ignore it and just go on that it wont be such a big deal, then you realize

that if you take care of yourself its usually easier to work with the disease,

he will catch on.. Thank you though for everything.

Lots of Love

(JAS, 21)

" Tepper, Michele " <MTepper@...> wrote:

Hugs . I am sorry you are feeling this way. I can only imagine the

frustration and the not being able to do what you want, when you want. I

have a daughter who's 22 and I know what she can do, and she is very

lucky to not have anything like meds and drs to consider. I wish that

for you. But I know that for whatever reason, a different path was given

you. Not chosen by you, yet given to you. I am sorry. Please know that

you are in my thoughts and prayers. I also give you a lot of credit for

sticking with the meds and things to try and improve your life. I know

feels the same frustration, but he does not take care of himself

as well as you do. You are at least mature enough to realize what you

must do to try to help yourself. I know this does not help much, but I

wanted you to know I am thinking of you, Hugs, Michele ( 18,

spondy)

[Guest guest]

Thank you Ginger, although I'm sorry that you are going through everything you

are going through and then some you reminded me something very important we are

all here for the same reason, support. So thank you for supporting me,

Lots of Love

(JAS,21)

Ginger Sunshine <pct777@...> wrote:

LIsa vent. I too need to vent. I havent' been feeling good at all and now I

have to go out and find a new place for me and my two children to live as he is

selling this house me and the chyildren have lived in for 16 years. I guess it's

time for flairs and venting.

Hugs; ginger

snooksmama@... wrote:

((((((((LISA)))))))))

My dear, you are due a vent. You are so strong ALL the time, but

sometimes you just have to let it all out. I'm so glad that you are here

and we can support you.

I think you are an incredible young woman and I know that you will

triumph over this disease. I also know that we all love you here and we

will continue to support you and pray for you. I wish I could come visit

and give you a day of pampering or something. I know that it wouldn't be

a fix, but maybe just a get away from all the pressures you are under.

Have you talked to your mom? For me, Mom was always the place I could go

for comfort and huge hugs.

I don't know what to say, but I am so very sorry for your frustration and

pain. Are you due to go back to the doctor anytime soon?

Keep us posted, dear . We care so very much about you.

Lots of love,

and Rob 16 JAS (I'll have to tell him it means JUVENILE ARTHRITIS

SUCKS!)

On Wed, 8 Feb 2006 03:44:18 -0800 (PST) Salvucci

<lisa_salvucci@...> writes:

I am feeling very frustrated about having this disease. I think a

majority of the time I don't even think about it as having a disease

because I have been living with it for so long that I don't think I even

remember a time when I didn't feel this way. But then there are days like

this (sometimes weeks like this) where I think to myself I have already

been living with this for so long and there is no end in sight and its

soo annoying! I feel so lucky to so far not need any type of replacement,

but at the same time its frustrating that nothing has really changed. I'm

going through a flare right now.. my hips, knees, and spine are killing

me and like a true spondy its affecting my feet in the worst possible

way. The other morning while walking to the bathroom in the morning I was

in tears my feet and knees hurt so bad that it was excruciating to walk

to the bathroom..I'm 21 I should be past that whole crying cause it hurts

thing.. I'm not a big wimp when it comes to pain either.. I had

abdominal surgery and was up walking a few hours later despite the fact

most people dont get up for at least 24 hrs.. but this pain made me cry..

The part that is bugging me most is I take all of these meds that have

these god awful side affects if I ever want to get pregnant I have to be

off Arava for 2-3 years.. granted I'm not trying to get pregnant anytime

soon..but that thought is scary..and then there is Remicade with all its

scary side affects and its like I wouldnt care if I felt like I was

getting a lot out of it, but I don't feel that way.. I still feel like

crap.. so why am I risking my life and future with these meds if they

aren't doing a lot.. And like college should be the best time of my life

I'm 21.. and its like I cant even go out and do anything irresponsible

(like drink more then one drink per week cause apparently my liver will

shut down) its not like I really want to do it.. I just want the option..

Arthritis has affected every part of my life and I'm not too

pleased about it.. even when it came to picking colleges I had to go with

the close ones so that I can come back every 8 weeks for my

rheumy/remicade appointments.. I sometimes just wish that I had like a

day to be disease free.. just a small break.. I don't remember what it is

like to not have pain or feel bad.. thats all I want... just one day..

(JAS, 21) J.A.S= Juvenile Arthritis Sucks.. not what it stands for

but the way I am feeling right now.. the acronym might as well be the

same!

[Guest guest]

Rusty,

Your words brought tears to my eyes because everything you said was so

true. You have been such an inspiration to me in my hardest times because you

have been through it all and you turned out amazing with the wisdom and strength

that I can only hope to someday posess. Thank you so much for always having

positive words and a virtual hug ready and willing whenever I am having one of

these days, your words mean more to me and have helped me more then I could ever

begin to describe, you give me hope and you remind me that I can make it and I

will be ok, like you said my pace may be slower but I can do it and I will get

there and I will do great things, I am so thankful to you for always reminding

me of that!

Lots of Love

(JAS, 21)

A Morse <dam755@...> wrote:

,

I relate to so much of what you're saying and I totally agree with it

too, this commonality we share because of this disease even though I am

nearly old enough to be your grandpa!

Yes JAS does suck! and it has rob us of so much in life and will continue

to cheat usof other things to come.

Having lived with it for 37 years now, I too can't remember what it was

like to be Arthritis free. like a muted graying movie reel I see my life

at the time in it when, I was not yet diagnosed or had even had my very

first flare. I know it to be factual because I've seen photo's of me as

a young boy and without the joint deformities, unencumbered by pain and

loss of range of motion. A time before every appendage of my body was

affected by this DAMN'D disease.

It has robbed so many of so much in their lives, adventure, romance,

career and too often the feeling of fitting in. Belonging to and being

accepted as viable and productive member of society as anyone else,

judged for who we are and what we can do, rather than how we outwardly

appear, because of this disease and what it can do to the physical

appearance of one.

I won't say it gets better as life goes on because with or without

Arthritis or any life altering condition, Life is life! it's neither is

or isn't, it just is.

We make of it as we want it to be or hope for it to become, dealing with

the obstacles put before us as we run the course.

You have every right to feel the way you do, and you need to feel that

way on occasion, in order to maintain your sanity and continue to deal

with it.

But my sweet young girl you are already ahead of the whole thing and so

far ahead of so many, 'normal people' who don't have to live life with

some type of physical condition. You are an inspiration for all to

emulate. A beautiful young 21 year old college woman, steaming down the

river of life. Course set and destination ahead not allowing this disease

stop you, though it has caused a reduction in speed. None the less you

venture forward on your journey, seeking and grabbing the brass ring of

accomplishment.

Many hugs and much admiration for you .

Rusty

[Guest guest]

You're welcome and I thank you for taking the time to write.

I have been so busy cleaning out every room of this place that I have pain

where I never had pain before. ha ha ha ha

Hugs; ginger

Salvucci <lisa_salvucci@...> wrote:

Thank you Ginger, although I'm sorry that you are going through everything you

are going through and then some you reminded me something very important we are

all here for the same reason, support. So thank you for supporting me,

Lots of Love

(JAS,21)

Ginger Sunshine <pct777@...> wrote:

LIsa vent. I too need to vent. I havent' been feeling good at all and now I

have to go out and find a new place for me and my two children to live as he is

selling this house me and the chyildren have lived in for 16 years. I guess it's

time for flairs and venting.

Hugs; ginger

snooksmama@... wrote:

((((((((LISA)))))))))

My dear, you are due a vent. You are so strong ALL the time, but

sometimes you just have to let it all out. I'm so glad that you are here

and we can support you.

I think you are an incredible young woman and I know that you will

triumph over this disease. I also know that we all love you here and we

will continue to support you and pray for you. I wish I could come visit

and give you a day of pampering or something. I know that it wouldn't be

a fix, but maybe just a get away from all the pressures you are under.

Have you talked to your mom? For me, Mom was always the place I could go

for comfort and huge hugs.

I don't know what to say, but I am so very sorry for your frustration and

pain. Are you due to go back to the doctor anytime soon?

Keep us posted, dear . We care so very much about you.

Lots of love,

and Rob 16 JAS (I'll have to tell him it means JUVENILE ARTHRITIS

SUCKS!)

On Wed, 8 Feb 2006 03:44:18 -0800 (PST) Salvucci

<lisa_salvucci@...> writes:

I am feeling very frustrated about having this disease. I think a

majority of the time I don't even think about it as having a disease

because I have been living with it for so long that I don't think I even

remember a time when I didn't feel this way. But then there are days like

this (sometimes weeks like this) where I think to myself I have already

been living with this for so long and there is no end in sight and its

soo annoying! I feel so lucky to so far not need any type of replacement,

but at the same time its frustrating that nothing has really changed. I'm

going through a flare right now.. my hips, knees, and spine are killing

me and like a true spondy its affecting my feet in the worst possible

way. The other morning while walking to the bathroom in the morning I was

in tears my feet and knees hurt so bad that it was excruciating to walk

to the bathroom..I'm 21 I should be past that whole crying cause it hurts

thing.. I'm not a big wimp when it comes to pain either.. I had

abdominal surgery and was up walking a few hours later despite the fact

most people dont get up for at least 24 hrs.. but this pain made me cry..

The part that is bugging me most is I take all of these meds that have

these god awful side affects if I ever want to get pregnant I have to be

off Arava for 2-3 years.. granted I'm not trying to get pregnant anytime

soon..but that thought is scary..and then there is Remicade with all its

scary side affects and its like I wouldnt care if I felt like I was

getting a lot out of it, but I don't feel that way.. I still feel like

crap.. so why am I risking my life and future with these meds if they

aren't doing a lot.. And like college should be the best time of my life

I'm 21.. and its like I cant even go out and do anything irresponsible

(like drink more then one drink per week cause apparently my liver will

shut down) its not like I really want to do it.. I just want the option..

Arthritis has affected every part of my life and I'm not too

pleased about it.. even when it came to picking colleges I had to go with

the close ones so that I can come back every 8 weeks for my

rheumy/remicade appointments.. I sometimes just wish that I had like a

day to be disease free.. just a small break.. I don't remember what it is

like to not have pain or feel bad.. thats all I want... just one day..

(JAS, 21) J.A.S= Juvenile Arthritis Sucks.. not what it stands for

but the way I am feeling right now.. the acronym might as well be the

same!

[Guest guest]

, once again I sit in a wash of ackalaids and light of phraze, that I

feel is so much more deserving for you and all the other young ones and

their amazing parents and family. I draw so much strength for all of you,

reading your accounts of dily trials and tribulations of liing and

dealing with what you's do.

But I will accept your beautiful words of phraze and as I do with all the

words of compassion and loving understanding, that I recieve from all of

you, I keep them in my heart.

The greatest thing to have come from this disease is, coming to know all

of you!

In many ways my life began in June of 2001 when I found the JRA list, for

until then, I never knew the magnitute of this disease and how is has

affected so many.

At so young an age! My education truely began that day while surfing the

web.

So I send out a enormous thank you to Georgina for starting this e-group

and so deeply sorrowed that she had to, because her son had been

diagnosed with this 'CRUD'.

By the way joshua, how's the driving going and have you been checking out

any muscle cars?

[Guest guest]

Rusty:

You are always eloquent, but this posting was so beautiful and straight

from your heart. Thank you for being the beautiful person that you are,

our dear Uncle Rusty.

and Rob 16 Spondy

On Wed, 8 Feb 2006 15:21:25 -0800 A Morse <dam755@...>

writes:

,

I relate to so much of what you're saying and I totally agree with it

too, this commonality we share because of this disease even though I am

nearly old enough to be your grandpa!

Yes JAS does suck! and it has rob us of so much in life and will continue

to cheat usof other things to come.

Having lived with it for 37 years now, I too can't remember what it was

like to be Arthritis free. like a muted graying movie reel I see my life

at the time in it when, I was not yet diagnosed or had even had my very

first flare. I know it to be factual because I've seen photo's of me as

a young boy and without the joint deformities, unencumbered by pain and

loss of range of motion. A time before every appendage of my body was

affected by this DAMN'D disease.

It has robbed so many of so much in their lives, adventure, romance,

career and too often the feeling of fitting in. Belonging to and being

accepted as viable and productive member of society as anyone else,

judged for who we are and what we can do, rather than how we outwardly

appear, because of this disease and what it can do to the physical

appearance of one.

I won't say it gets better as life goes on because with or without

Arthritis or any life altering condition, Life is life! it's neither is

or isn't, it just is.

We make of it as we want it to be or hope for it to become, dealing with

the obstacles put before us as we run the course.

You have every right to feel the way you do, and you need to feel that

way on occasion, in order to maintain your sanity and continue to deal

with it.

But my sweet young girl you are already ahead of the whole thing and so

far ahead of so many, 'normal people' who don't have to live life with

some type of physical condition. You are an inspiration for all to

emulate. A beautiful young 21 year old college woman, steaming down the

river of life. Course set and destination ahead not allowing this disease

stop you, though it has caused a reduction in speed. None the less you

venture forward on your journey, seeking and grabbing the brass ring of

accomplishment.

Many hugs and much admiration for you .

Rusty