Re: Loved ones and our illness

[Guest guest]

; and Group

WOW, Your email is great, it tells exactly how people that loves us

so much seem to not care or in denial. My daughter is the

kindest sweetest person you can meed. I think your right. She don't

want to think of me being sick. is not shallow or cruel. I

was afraid someone would think that of her.

Yes, I agree there are the people who think its our fault we are

sick. And even said " mommy if you lose weight you will not

hurt like that, even though I am diagnosed with CHF, COPD, Diabetes

and even more. SHe is convinced I will be fine if I only lose

weight. Of course losing weight would help these conditions. oh RA

too. lol

Thank you Group for being so syphathetic. I will hang in there and

be glad for another day. I am looking forward to some days of not

hurting so bad. Wednesday I will let all of you know what Doc gave

me to help.

Love you all

Clora

[Guest guest]

Hello ,

What a wonderful mail....so moving.

Just a PS on your so insightful thoughts, not only does your caring ,really

very young, son 'not know how to handle it' and so 'avoids it.'as he explains

to you.(Protectively)

Also he feels so much for you and is trying manfully to cope, not to burden

you with his own personal experience of change/loss, seeing, adjusting to a

beloved 'strong' parent inexplicably weakened( life is definitely not fair!) 

He ,(and so many others) would benefit himself from a site ,or group, where he

could safely 'vent' as someone so closely touched by this illness,trying to

understand  and not feel so overwhelmed

 Vey true, It affects all the family.

Best wishes ,

Chris

RE: [ ] I'm done with MTX

> > >

> > > I am a former lurker and thought I'd start keeping up with the

> > posts. I was

> > > diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with

> > occasional

> > > times on prednisone. I always feel the best when i'm on

> > prednisone. I'm now

> > > having a bunch of lung problems. Out of breath at the simplest

> > tasks, esp.

> > > steps. I quit taking the MTX while undergoing some lung tests.

> > No pulm.

> > > Hypertension. I see the pulmonologist next month and also my

> > Rheumy. They are

> > > both new doctors (insurance change) and I like them both. I'm

> > hoping to go on

> > > Arava. Any thoughts on the lung issues? I also have neuropathy

> > (no

> > > diabetes). Not sure what else I should have the dr's look for.

> > I'd also like to

> > > know what people think of Arava. By the way, I'm 46 with 3 kids

> > (19, 10, &

> > > 7). I feel bad for my younger ones. I can't keep up with them

> > anymore.

> > >

> > > Have a good day all,

> > > Tammy in Wisconsin

> > > ____________ _________ _________ _________ _________ _________ _

> > > Use video conversation to talk face-to-face with Windows Live

> > Messenger.

> > >

> > _http://www.windowsl http://www.

> windohttp: //wwwhttp: //wwhttp: //wwwhttp

> > ://wwwhtt

> > > p://www.http: //wwwhttp: //www.w_

> > > (http://www.windowsl ive.com/messenge r/connect_ your_way. html?

> > ocid=TXT_TAGLM_ WL_Refresh_ messenger_ video_072008)

> > >

> > >

[Guest guest]

I think those that love us, try to hope for the best for us.  My family tries to

stay extremely positive as negativity is really bad for us, causes depression,

emotional pain which then adds to our physical pain.  Also, just because I have

the disease doesn't mean I'll end up crippled or in a wheel chair.  If anyone

ever tries to feel sorry for me, I shake it off.  There are people in this world

a whole lot sicker than I am.  I'm not terminal, I'm going to live.  I may have

pain but still have life.  Tomorrow, next week, next year, there will be better

medications, maybe one day a cure! Babies are born ill everyday, some only live

a few days, some live with pain their whole lives.  Pain has made me stronger. 

It's made me better.  I believe that pain is weakness leaving my body.  I'd

never wish illness on my worst enemy and I know many have a difficult issue

understanding pain.  Those of us with just FMS as a diagnosis understand that

quite

well.  It's a very judged disease since there are no known medical tests to

prove it, no known cause, and all treatments are experimental at best.  Everyone

will feel pain in thier lives at one time or another.  Several will develop

aches and pains as the body ages.  We all experience pain so differently as each

immune system is unique, some have more than one disease.  I just make sure that

my emotional outlook on it stays very positive and upbeat. 

From: ktandtm <ktandtm@...>

Subject: [ ] Loved ones and our illness

Date: Sunday, July 27, 2008, 10:32 AM

I just wanted to say that my oldest son tries to avoid me talking

about my illness because he doesn't know how to handle it. I asked

him one day why he changes the subject when I talk to him about it.

(I want him informed and know what is going on and I feel he is old

enough to understand since he is 23 and I wouldn't want something to

happen down the road and he wonder why no one ever told him things

could get bad)He said " mom I don't want to think about any bad that

may or may not happen to you. I just can't handle it "

Anyway I am sharing this because it made me realize that could be why

a lot of our loved ones avoid us or the situation because they don't

know how to handle it. I know it seems very shallow and cruel and it

is but after he told me this I started looking at things from the

other persons side of it. As wrong as it is, its easier for them to

avoid it than deal with it since they just don't know how to deal

with it. Yes there are also the shallow people who don't want to be

inconvenienced by our situation. I have a good friend who lives out

of state and is a nurse practitioner. We have had it out on several

occasions because she thinks I can just take a bunch of meds and it

will fix everything and that I need to " get over it " . Well I am

taking everything I am suppose to and I would love to give her this

dang crap for just 24 hours and watch her change her tune. But with

a medical mind she thinks everything can be fixed and if it isn't

getting fixed it is because we aren't doing something right. Well in

the last year I have knocked her down a few notches and she don't

like the realization. She had been having bad neck pain for a few

months from stress and she was complaining about it. I asked her

what she was whinning about. That she needed to take some muscle

relaxers and get over it. She said " you don't understand, I have to

work and this is something that should be going away. " I said " oh

and you don't think those of us with autoimmune diseases don't feel

the same? We feel like this crap should go away too. You only have

to deal with this for a few months. Think if you had to accept that

you had it for life. " She got real quiet and now she never talks to

me about her pain ever. LOL I normally would never be that

insensitive to someone but she deserved it and it was the only way to

make her understand.

> > >

> >

> > Hi Jolene and Tammy and other mums out there,

> >

> > It is so good to be able to read posts from mothers suffering

from

> > the same illnesses. It doesn't make me feel so alone. I like you

> > all out there, grieve the life I once had before I was struck

down

> > with illness.

> >

> > But I try and be postitive and keep my sense of humour, because

> > without that I think I would get very depressed.

> >

> > Raising children with a disability is a real challenge and I do

> know

> > that my youngest daughter who has been at home the longest with

me

> > and seen the disabiling affects it has on my life,has so much

> > compassion and more understanding than others who don't see what

> > goes on behind closed doors.

> >

> > I was told the other day I looked the picture of health !!! I had

> > ventured out of the house to go to karaoke, that I have not done

> in

> > ages because of my ill health. I thought to myself,if only you

> > could see my pain. But that is how it is, if people cannot see

> from

> > the outside they don't understand.

> >

> > Anyway my thoart has been affected by all the medication and my

> > breathing is not too good from the inflamtion around my heart,

but

> I

> > still sang two songs and didn't care if I tortured the crowd. It

> > was my thearapy.!!!

> >

> > Then back home to more pain !!! Life is full of suprises some we

> > don't want but have no choice. So I wish you all and your

families

> > all the best and hope your health improves. Keep persevering and

> > god bless you all.

> >

> > .

> >

> > > Hi im Jolene 43 year old mother of five kids two still at home.

> > I have

> > > ra/psoriatic arthritis, and rsd as well. I take five mtx a week

> > for for now. I

> > > do notice some weeks im couching a lot but i smoke which is

> > really bad. I

> > > also know what its like to raise kids with illness but we are

> > surviving you

> > > can email me anytime. It is a hard thing to deal with, but we

> > have tried to

> > > do what we can to make the kids more independent and i agree

> they

> > have a much

> > > better view of people with disabilities for sure.

> > >

> > > Jolene

> > >

> > >

> > > In a message dated 7/24/2008 6:57:57 P.M. Eastern Daylight

Time,

> > > melyndagamez@ ... writes:

> > >

> > >

> > >

> > >

> > > hi tammy, i'm a38yr.old mother with severe ra,osteo, &

neuropathy.

> > > what more could i possibly ask for?lol!

> > > i too take mtx, plaquenile, prednisone,etc. i too t

> > > i just started having breathing problems around a year ago but

i

> > did not

> > > know what it was,i was scared!!!!

> > > the dr. said i had bad anxiety, i believed other wise...

> > > i mean i was put in the hospital for a week, did breathing

tests

> > etc...

> > > at home i would stop breathing, it scared the hell out of me,

my

> > hub and

> > > 10yr.old daughter,alyssa.

> > > now i know i have problems cuz my rheummy did testing come to

> > find out my

> > > esophagus is closing!!

> > > well i just deal!!!

> > > i know what u mean when u say about keeping up with your

> children.

> > > it's hard, my alyssa has had to deal with alot but one thing i

> > can say &

> > > it's the god's honest truth is she has bcome

> > > a very loving,kind, a very loving,a very loving,kind,

> > > she knows that we're all different in some way or another,no

one

> > is

> > > PERFECT!!!!

> > > god bless,melyndagamez 7/24/08 6p.m.central

> > >

> > > RE: [ ] I'm done with MTX

> > >

> > > I am a former lurker and thought I'd start keeping up with the

> > posts. I was

> > > diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with

> > occasional

> > > times on prednisone. I always feel the best when i'm on

> > prednisone. I'm now

> > > having a bunch of lung problems. Out of breath at the simplest

> > tasks, esp.

> > > steps. I quit taking the MTX while undergoing some lung tests.

> > No pulm.

> > > Hypertension. I see the pulmonologist next month and also my

> > Rheumy. They are

> > > both new doctors (insurance change) and I like them both. I'm

> > hoping to go on

> > > Arava. Any thoughts on the lung issues? I also have neuropathy

> > (no

> > > diabetes). Not sure what else I should have the dr's look for.

> > I'd also like to

> > > know what people think of Arava. By the way, I'm 46 with 3 kids

> > (19, 10, &

> > > 7). I feel bad for my younger ones. I can't keep up with them

> > anymore.

> > >

> > > Have a good day all,

> > > Tammy in Wisconsin

> > > ____________ _________ _________ _________ _________ _________ _

> > > Use video conversation to talk face-to-face with Windows Live

> > Messenger.

> > >

> > _http://www.windowsl http://www.

> windohttp: //wwwhttp: //wwhttp: //wwwhttp

> > ://wwwhtt

> > > p://www.http: //wwwhttp: //www.w_

> > > (http://www.windowsl ive.com/messenge r/connect_ your_way. html?

> > ocid=TXT_TAGLM_ WL_Refresh_ messenger_ video_072008)

> > >

> > >

[Guest guest]

,

Well said!

I always tell myself that things could be worse and they may be at

times but I still am so much better off than many, many people. The

days that are full of pain I remind myself that it is still a great

day compared to the ones that I have spent at hospitals with

terminally ill loved ones or funeral homes grieving.

Shirley

>

> I think those that love us, try to hope for the best for us.  My

family tries to stay extremely positive as negativity is really bad

for us, causes depression, emotional pain which then adds to our

physical pain.  Also, just because I have the disease doesn't mean

I'll end up crippled or in a wheel chair.  If anyone ever tries to

feel sorry for me, I shake it off.  There are people in this world a

whole lot sicker than I am.  I'm not terminal, I'm going to live.  I

may have pain but still have life.  Tomorrow, next week, next year,

there will be better medications, maybe one day a cure! Babies are

born ill everyday, some only live a few days, some live with pain

their whole lives.  Pain has made me stronger.  It's made me

better.  I believe that pain is weakness leaving my body.  I'd never

wish illness on my worst enemy and I know many have a difficult

issue understanding pain.  Those of us with just FMS as a diagnosis

understand that quite

> well.  It's a very judged disease since there are no known

medical tests to prove it, no known cause, and all treatments are

experimental at best.  Everyone will feel pain in thier lives at one

time or another.  Several will develop aches and pains as the body

ages.  We all experience pain so differently as each immune system

is unique, some have more than one disease.  I just make sure that

my emotional outlook on it stays very positive and upbeat. 

[Guest guest]

Hello Group

I have had pain all my adult life. I am 54 years old. I went to

college with pain, I went to factory work in pain. Doctors had no

Idea what was wrong with me. Most of the time I took Feornil with

codein, for many years, darvecet. The list was long. I never abused

pain medication. I just wanted to be able to work or to live normal

with out pain. If there is anyone that can shake real pain off than

God bless them. No one can say how bad some one's pain is except the

person in pain.

About 5 years ago a doctor diagnosed me with RA and Fibro. That was

a start, I could get some relief from this horrific pain I have been

in. I have went to the ladies room and wept in public places. I have

asked God to please help me. I want to say that many times there was

no shaking off pain, there was no grin and bear it, The positive

attitude may have been coming from my face, But the pain inside me

was screaming help. I will never as long as I live tell someone your

pain is trivial to smile and go on. If it hurts, I am so so sorry

and I pray that person can get relief.

Right now I am in so much pain I have to go lay down every hour or

so and take it. Today I took 2 of my lortabs I hurt so bad, don't

worry I wont do that again. I had to call my daugter to sit with me

till it wore off. It helped a lot. I could grin and bear it than. I

could shake it off. It took two lortabs to do it. I really got ill

so never do that unless your doctor tell you to. I go to my Rheumy

Wednesday. She said after I get my infection cleared up I can take

injections. Woo hoo. I can hardly wait. I hope its biological, or

enbrel or humerin. Like you guys was talking about.

I don't mean to seem mean, I just want to say not everyone can be

positive all the time. Thats like telling someone to shake off

Depression. Can't be done. With exceptions of prayer or those that

have mind control. Which i have prayer. But no mind control lol.

God bless everyone

Clora

[Guest guest]

> > > >

> > >

> > > Hi Jolene and Tammy and other mums out there,

> > >

> > > It is so good to be able to read posts from mothers suffering

> from

> > > the same illnesses. It doesn't make me feel so alone. I like

you

> > > all out there, grieve the life I once had before I was struck

> down

> > > with illness.

> > >

> > > But I try and be postitive and keep my sense of humour,

because

> > > without that I think I would get very depressed.

> > >

> > > Raising children with a disability is a real challenge and I

do

> > know

> > > that my youngest daughter who has been at home the longest

with

> me

> > > and seen the disabiling affects it has on my life,has so much

> > > compassion and more understanding than others who don't see

what

> > > goes on behind closed doors.

> > >

> > > I was told the other day I looked the picture of health !!! I

had

> > > ventured out of the house to go to karaoke, that I have not

done

> > in

> > > ages because of my ill health. I thought to myself,if only you

> > > could see my pain. But that is how it is, if people cannot see

> > from

> > > the outside they don't understand.

> > >

> > > Anyway my thoart has been affected by all the medication and

my

> > > breathing is not too good from the inflamtion around my heart,

> but

> > I

> > > still sang two songs and didn't care if I tortured the crowd.

It

> > > was my thearapy.!!!

> > >

> > > Then back home to more pain !!! Life is full of suprises some

we

> > > don't want but have no choice. So I wish you all and your

> families

> > > all the best and hope your health improves. Keep persevering

and

> > > god bless you all.

> > >

> > > .

> > >

> > > > Hi im Jolene 43 year old mother of five kids two still at

home.

> > > I have

> > > > ra/psoriatic arthritis, and rsd as well. I take five mtx a

week

> > > for for now. I

> > > > do notice some weeks im couching a lot but i smoke which is

> > > really bad. I

> > > > also know what its like to raise kids with illness but we

are

> > > surviving you

> > > > can email me anytime. It is a hard thing to deal with, but

we

> > > have tried to

> > > > do what we can to make the kids more independent and i agree

> > they

> > > have a much

> > > > better view of people with disabilities for sure.

> > > >

> > > > Jolene

> > > >

> > > >

> > > > In a message dated 7/24/2008 6:57:57 P.M. Eastern Daylight

> Time,

> > > > melyndagamez@ ... writes:

> > > >

> > > >

> > > >

> > > >

> > > > hi tammy, i'm a38yr.old mother with severe ra,osteo, &

> neuropathy.

> > > > what more could i possibly ask for?lol!

> > > > i too take mtx, plaquenile, prednisone,etc. i too t

> > > > i just started having breathing problems around a year ago

but

> i

> > > did not

> > > > know what it was,i was scared!!!!

> > > > the dr. said i had bad anxiety, i believed other wise...

> > > > i mean i was put in the hospital for a week, did breathing

> tests

> > > etc...

> > > > at home i would stop breathing, it scared the hell out of

me,

> my

> > > hub and

> > > > 10yr.old daughter,alyssa.

> > > > now i know i have problems cuz my rheummy did testing come

to

> > > find out my

> > > > esophagus is closing!!

> > > > well i just deal!!!

> > > > i know what u mean when u say about keeping up with your

> > children.

> > > > it's hard, my alyssa has had to deal with alot but one thing

i

> > > can say &

> > > > it's the god's honest truth is she has bcome

> > > > a very loving,kind, a very loving,a very loving,kind,

> > > > she knows that we're all different in some way or another,no

> one

> > > is

> > > > PERFECT!!!!

> > > > god bless,melyndagamez 7/24/08 6p.m.central

> > > >

> > > > RE: [ ] I'm done with MTX

> > > >

> > > > I am a former lurker and thought I'd start keeping up with

the

> > > posts. I was

> > > > diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx

with

> > > occasional

> > > > times on prednisone. I always feel the best when i'm on

> > > prednisone. I'm now

> > > > having a bunch of lung problems. Out of breath at the

simplest

> > > tasks, esp.

> > > > steps. I quit taking the MTX while undergoing some lung

tests.

> > > No pulm.

> > > > Hypertension. I see the pulmonologist next month and also my

> > > Rheumy. They are

> > > > both new doctors (insurance change) and I like them both.

I'm

> > > hoping to go on

> > > > Arava. Any thoughts on the lung issues? I also have

neuropathy

> > > (no

> > > > diabetes). Not sure what else I should have the dr's look

for.

> > > I'd also like to

> > > > know what people think of Arava. By the way, I'm 46 with 3

kids

> > > (19, 10, &

> > > > 7). I feel bad for my younger ones. I can't keep up with

them

> > > anymore.

> > > >

> > > > Have a good day all,

> > > > Tammy in Wisconsin

> > > > ____________ _________ _________ _________ _________

_________ _

> > > > Use video conversation to talk face-to-face with Windows

Live

> > > Messenger.

> > > >

> > > _http://www.windowsl http://www.

> > windohttp: //wwwhttp: //wwhttp: //wwwhttp

> > > ://wwwhtt

> > > > p://www.http: //wwwhttp: //www.w_

> > > > (http://www.windowsl ive.com/messenge r/connect_ your_way.

html?

> > > ocid=TXT_TAGLM_ WL_Refresh_ messenger_ video_072008)

> > > >

> > > >

[Guest guest]

hello clora, i'm feeling your PAIN!!! at one time or another we all want pain

free days.it's sooo HARD cuz god gives us only what we can bare as an individual

& nothing more. i also cry all the time,my family probably thinks i'm CRAZY!!

i try to hold the pain in but sometimes people figure me out cuz i'm not as

bubbly as i should b. i tell them i am not allowed any down time. they say YES

but not pity me time!!!!!

i'm like u clora know one knows your pain as bettter than yourself!!! i know

it's HARD but sometimes we just have to grin & bear it

& leave it in gods HANDS!!!!!!!!!!! god bless,melyndagamez

[ ] Re: Loved ones and our illness

Hello Group

I have had pain all my adult life. I am 54 years old. I went to

college with pain, I went to factory work in pain. Doctors had no

Idea what was wrong with me. Most of the time I took Feornil with

codein, for many years, darvecet. The list was long. I never abused

pain medication. I just wanted to be able to work or to live normal

with out  pain. If there is anyone that can shake real pain off than

God bless them. No one can say how bad some one's pain is except the

person in pain.

About 5 years ago a doctor diagnosed me with RA and Fibro. That was

a start, I could get some relief from this horrific pain I have been

in. I have went to the ladies room and wept in public places. I have

asked God to please help me. I want to say that many times there was

no shaking off pain, there was no grin and bear it, The positive

attitude may have been coming from my face, But the pain inside me

was screaming help. I will never as long as I live tell someone your

pain is trivial to smile and go on. If it hurts, I am so so sorry

and I pray that person can get relief.

Right now I am in so much pain I have to go lay down every hour or

so and take it. Today I took 2 of my lortabs I hurt so bad, don't

worry I wont do that again. I had to call my daugter to sit with me

till it wore off. It helped a lot. I could grin and bear it than. I

could shake it off. It took two lortabs to do it. I really got ill

so never do that unless your doctor tell you to. I go to my Rheumy

Wednesday. She said after I get my infection cleared up I can take

injections. Woo hoo. I can hardly wait. I hope its biological, or

enbrel or humerin. Like you guys was talking about.

I don't mean to seem mean, I just want to say not everyone can be

positive all the time. Thats like telling someone to shake off

Depression. Can't be done. With exceptions of prayer or those that

have mind control. Which i have prayer. But no mind control lol.

God bless everyone

Clora

------------------------------------

[Guest guest]

Clora and Group,

Please forgive me if you misunderstood my previous post.

When I said that many people were worse than me, I was including

this group. I have had my bouts with depression also. My doctor put

me on meds for it. I have been successful thus far in climbing out

of it. My daughter has fibro. She and my grand-daughter live with me

and depend on me totally for support. She is on her third go round

for disability. This is part of what keeps me pushing forward. We

can't end up on the street. My therapy of choice is praise. I do

stress that this is mine. It isn't always easy but it always comes

through for me.I don't know what the future holds but I need to

believe that it will be better for all of us.

I am so thankful to each of the group that have taken the biologics

and have helped the medical field in finding out how they work. I

pray that a cure or a drug for complete remission will be availible

soon. My first cousin died of complications from RA after an

unrelated surgery. I don't take it lightly. If someone in my

immediate family had to have RA, I am so glad it was me and not my

children or grand-children. If they do develope it, maybe something

that I have tried will work for them.

Again I am sorry. I know some people in this group have too many

health problems and they are not me.

I truly hope everyone has a good day.

Shirley

>

> Hello Group

>

> I have had pain all my adult life. I am 54 years old. I went to

> college with pain, I went to factory work in pain. Doctors had no

> Idea what was wrong with me. Most of the time I took Feornil with

> codein, for many years, darvecet. The list was long. I never

abused

> pain medication. I just wanted to be able to work or to live

normal

> with out pain. If there is anyone that can shake real pain off

than

> God bless them. No one can say how bad some one's pain is except

the

> person in pain.

>

> About 5 years ago a doctor diagnosed me with RA and Fibro. That

was

> a start, I could get some relief from this horrific pain I have

been

> in. I have went to the ladies room and wept in public places. I

have

> asked God to please help me. I want to say that many times there

was

> no shaking off pain, there was no grin and bear it, The positive

> attitude may have been coming from my face, But the pain inside me

> was screaming help. I will never as long as I live tell someone

your

> pain is trivial to smile and go on. If it hurts, I am so so sorry

> and I pray that person can get relief.

>

> Right now I am in so much pain I have to go lay down every hour or

> so and take it. Today I took 2 of my lortabs I hurt so bad, don't

> worry I wont do that again. I had to call my daugter to sit with

me

> till it wore off. It helped a lot. I could grin and bear it than.

I

> could shake it off. It took two lortabs to do it. I really got ill

> so never do that unless your doctor tell you to. I go to my Rheumy

> Wednesday. She said after I get my infection cleared up I can take

> injections. Woo hoo. I can hardly wait. I hope its biological, or

> enbrel or humerin. Like you guys was talking about.

>

> I don't mean to seem mean, I just want to say not everyone can be

> positive all the time. Thats like telling someone to shake off

> Depression. Can't be done. With exceptions of prayer or those that

> have mind control. Which i have prayer. But no mind control lol.

> God bless everyone

>

> Clora

>

[Guest guest]

About pain, I know many of us has showed a happy face many time

while we was in pain. I meant no malise when I talk about how bad

our pain is. I know Melynda God wont put more on us than we can

bear, I think thats what keeps me going.

I guess I am going to have to hold the pain in a little more, my

daughter thinks I am faking pain. She said yea mom just a little

faking. OMG I was holding a lot in lol. Her sister told me she will

know cause she seems to take after me. I pray she don't have RA.

I never knew what pain RA people go through, even though I have

always hurt. I have had a flare for the last month, and omg I can't

function normally at all. I cant clean house. I love to clean my

house. At least, my husband is doing a great job. He's doing better

than I did. haha. He never did much of the house work before lol.

I do bare the pain but I ain't grinning lol. And, no I don't want

pity. I want relief. I got up this mornig feeling like crap. Since I

have had RA I seem to wake up feeling like crap. I heard it on here

to. , I get moving around and I begin to feel better. I don't think

your crazy Mylendia, pain does that to us. Sure people figure us out

when we are not bubbably as usual..

I miss a lot of things going on around the family cause I stay home

all the time. I don't feel like going anywhere. Its a job just to

walk to the car. Dont get me wrong, I can sit. I get on computer

and play games. I watch tv. So I am not bored. Obviously I write my

group a lot. I read all of your emails. I can sit for a couple of

hours than I have to lie down for a few hours. I love to hear from

each and every one of you guys. Wednesday is almost here, thats when

my rheumy is going to give me some new pain relief. woo hoo

hugs everyone

Clora

[Guest guest]

Hi Clora: I have been reading all the posts, and just wanted to wish

you good luck with your Rheumy appt. Wed. I pray you will get relief

very soon.

It has been a long month of pain and suffering for you. I hope your

Rheumy gives you the RX's for stronger pain meds., hopefully a steroid

shot if he thinks it will help you now. Also, I pray your Rheumy will

start to treat your RA very aggressively. I just know you can't bear

all this pain and suffering any longer. Pain overrides everything, and

then we just can't function anymore. I have been there many times

Clora. It bothers me so much to see you and all the others here

suffering that wretched pain, day in and day out.

God Bless you, and all the wonderful caring people here in our group.

Wishing everyone here, painfree days.

Hugs, Barbara

>

>

> About pain, I know many of us has showed a happy face many time

> while we was in pain. I meant no malise when I talk about how bad

> our pain is. I know Melynda God wont put more on us than we can

> bear, I think thats what keeps me going.

>

> I guess I am going to have to hold the pain in a little more, my

> daughter thinks I am faking pain. She said yea mom just a little

> faking. OMG I was holding a lot in lol. Her sister told me she will

> know cause she seems to take after me. I pray she don't have RA.

>

> I never knew what pain RA people go through, even though I have

> always hurt. I have had a flare for the last month, and omg I can't

> function normally at all. I cant clean house. I love to clean my

> house. At least, my husband is doing a great job. He's doing better

> than I did. haha. He never did much of the house work before lol.

>

> I do bare the pain but I ain't grinning lol. And, no I don't want

> pity. I want relief. I got up this mornig feeling like crap. Since I

> have had RA I seem to wake up feeling like crap. I heard it on here

> to. , I get moving around and I begin to feel better. I don't think

> your crazy Mylendia, pain does that to us. Sure people figure us out

> when we are not bubbably as usual..

>

> I miss a lot of things going on around the family cause I stay home

> all the time. I don't feel like going anywhere. Its a job just to

> walk to the car. Dont get me wrong, I can sit. I get on computer

> and play games. I watch tv. So I am not bored. Obviously I write my

> group a lot. I read all of your emails. I can sit for a couple of

> hours than I have to lie down for a few hours. I love to hear from

> each and every one of you guys. Wednesday is almost here, thats when

> my rheumy is going to give me some new pain relief. woo hoo

> hugs everyone

>

> Clora

>

[Guest guest]

HI CLORA, I HOPE U FEEL BETTER SOON! HOPEFULLY THEY WILL GIVE U SOMETHING

STRONGER FOR PAIN.

NO ONE NEEDS TO SUFFER LIKE YOU'VE BEEN SUFFERING. IT'S NOT FAIR!!!!!!! GOD

BLESS & KEEP US POSTED ON YOUR VISIT. MELYNDA GAMEZ

[ ] Re: Loved ones and our illness

Hi Clora:  I have been reading all the posts, and just wanted to wish

you good luck with your Rheumy appt. Wed.  I pray you will get relief

very soon.

It has been a long month of pain and suffering for you.  I hope your

Rheumy gives you the RX's for stronger pain meds., hopefully a steroid

shot if  he thinks it will help you now.  Also, I pray your Rheumy will

start to treat your RA very aggressively.  I just know you can't bear

all this pain and suffering any longer.  Pain overrides everything, and

then we just can't function anymore.  I have been there many times

Clora. It bothers me so much to see you and all the others here

suffering that wretched pain, day in and day out.

God Bless you, and all the wonderful caring people here in our group.

Wishing everyone here, painfree days.

Hugs,  Barbara

>

>

> About pain, I know many of us has showed a happy face many time

> while we was in pain. I meant no malise when I talk about how bad

> our pain is. I know Melynda God wont put more on us than we can

> bear, I think thats what keeps me going.

>

> I guess I am going to have to hold the pain in a little more, my

> daughter thinks I am faking pain. She said yea mom just a little

> faking. OMG I was holding a lot in lol. Her sister told me she will

> know cause she seems to take after me. I pray she don't have RA.

>

> I never knew what pain RA people go through, even though I have

> always hurt. I have had a flare for the last month, and omg I can't

> function normally at all. I cant clean house. I love to clean my

> house. At least, my husband is doing a great job. He's doing better

> than I did. haha. He never did much of the house work before lol.

>

> I do bare the pain but I ain't grinning lol. And, no I don't want

> pity. I want relief. I got up this mornig feeling like crap. Since I

> have had RA I seem to wake up feeling like crap. I heard it on here

> to. , I get moving around and I begin to feel better. I don't think

> your crazy Mylendia, pain does that to us. Sure people figure us out

> when we are not bubbably as usual..

>

> I miss a lot of things going on around the family cause I stay home

> all the time. I don't feel like going anywhere. Its a job just to

> walk to the car. Dont get me wrong, I can sit. I get on computer

> and play games. I watch tv.. So I am not bored. Obviously I write my

> group a lot. I read all of your emails. I can sit for a couple of

> hours than I have to lie down for a few hours. I love to hear from

> each and every one of you guys. Wednesday is almost here, thats when

> my rheumy is going to give me some new pain relief. woo hoo

> hugs everyone

>

> Clora

>

------------------------------------

[Guest guest]

Gamez, Barbara and Group

Tomorrow is the big day to see the Rheumy for my pain. I have been

taking loretab for headahces for my pain. I want to think all of you

for your concern and kind words. I will keep you informed on what the

doc says and does. The appointment is at 2:30, so I will be sending

the email about 8pm.

hugs

Clora

[Guest guest]

I am there with all of you as well, and as shallow as this may sound I have

addressed this subject here before and recieved much support. I am glad its

being addressed again as well and think it should be often. Its a problem I feel

all of us are going through. I have been dealing with alot of pain lately. All

blood work negative at this point, first was being treated for RA, then was told

could be Lupus...I went to the doctor just yesterday and told her that when she

told me Lupus on my last visit everything else she said was irrelevent...She

said to me listen, this is what I have on your chart...autoimmune inflammatory

disease (meaning your body fights its self) with connective tissue disease...she

told me she wasnt putting me in any category at this time as there are 100's out

there. I really like her, I feel we are on the rght track with the meds, but

back to family and friend support...when i hurt, i feel i should be able to talk

to my best friends

about it..and maybe i do too much, with out a name for what i have drives me

and its all i can think about...well, thursday i get an email from my best

freind that our other friend said i should when drama queen of the year...and

then she put LOL on the end. I emailed her back on how insensitive that was and

I havent tt her since, no I am sorry, no I didnt mean to hurt your feelings,

nothing...no understanding...maybe she is more in denial than i am...who knows..

[Guest guest]

--- In , <kmitch1966@...>

wrote:

Hi ,

Sorry to hear about your friend's shallow comments!! It is usually

the ones that make such remarks would make the worst patients

themselves. But I do understand how much this must hurt you.

I am from a big family but when I was most in need, there were only

a few that helped us out. I also have my youngest daughter who has a

rare autoimmune disorder where her antibodies kill off her blood!!!

when it reacts it is so frightening and I worry so much for her.

When she is in hospital having tranfusions, she tells me she feels

like such a fake, because she in not in pain like me !!

Omg !!! She is such a sweet girl and has gone through so much in

her 15years of life and seen so much suffering. I would give

anything to have her illness and for her to have good health, but we

don't have a say in these things.

But I get very upset when some family members don't bother to just

pick up the phone and see how she is !!!

It really makes you realise who the real caring people are in our

lives. Maybe the others just don't know what to say, but I am lucky

that the dear ones that care, say some lovely things to me and how I

deal with things much better than they would in my situation, others

just make you feel like you are a drama queen !!!

But I always manage to have a laugh as it really is the best

medicine !! Even if it is at my own expense !!!

I really hope your friend sees the light and contacts you to

see how you are and I hope you get some good answers on your

condition. Hang in there, you are amongst friends on this support

line.

Take care, .

>

> I am there with all of you as well, and as shallow as this may

sound I have addressed this subject here before and recieved much

support. I am glad its being addressed again as well and think it

should be often. Its a problem I feel all of us are going through. I

have been dealing with alot of pain lately. All blood work negative

at this point, first was being treated for RA, then was told could

be Lupus...I went to the doctor just yesterday and told her that

when she told me Lupus on my last visit everything else she said was

irrelevent...She said to me listen, this is what I have on your

chart...autoimmune inflammatory disease (meaning your body fights

its self) with connective tissue disease...she told me she wasnt

putting me in any category at this time as there are 100's out

there. I really like her, I feel we are on the rght track with the

meds, but back to family and friend support...when i hurt, i feel i

should be able to talk to my best friends

> about it..and maybe i do too much, with out a name for what i

have drives me and its all i can think about...well, thursday i get

an email from my best freind that our other friend said i should

when drama queen of the year...and then she put LOL on the end. I

emailed her back on how insensitive that was and I havent tt her

since, no I am sorry, no I didnt mean to hurt your feelings,

nothing...no understanding...maybe she is more in denial than i

am...who knows..

>

[Guest guest]

> Hi Clora,

Good luck with your appointment tommorrow, hope you get some much

needed help.

Am thinking of you,

.

> Gamez, Barbara and Group

>

> Tomorrow is the big day to see the Rheumy for my pain. I have been

> taking loretab for headahces for my pain. I want to think all of you

> for your concern and kind words. I will keep you informed on what

the

> doc says and does. The appointment is at 2:30, so I will be sending

> the email about 8pm.

> hugs

>

> Clora

>

[Guest guest]

and Group

Awe kelly I am so sorry you have a nimcumpoop for a rheumy, Mine is

a litlle like a nimpcumpoop too, but she is giving me something for

pain tomorrow after a year. But mine just got bad a month ago. What

do you mean a 100 per cent out there. Does she mean people with

that. I am so sorry this idiot is letting you suffer. I would get

anew rheumy, but I am struck with mine right now.

I would kick your best bud in the but, but my leg hurts to much.

That was mean of her to call you a drama queen. I am so so so very

sorry you have pain. I will pray for you. I think people don't want

to hear about someone else's pain and problems except their own. I

have had friends like that before, but I got away from them cause

they are the shallow ones not me.

you deserve better and I think the group would agree, now as

your rheumy, I can't wait to see what the group says about him/her.

Good luck and God bless you kelly we all love you and are sorry to

hear that you are running into shallow people and doctor.

hugs everyone

Clora

[Guest guest]

and Group

Thank you , I can haldly wait untill tomorrow , wednesday. I

appreciate your and everyones concern

God bless you all

Clora

[Guest guest]

I know how insensitive family members can be. I had open heart

surgery in 2003 and recently my brother asked me why I had a scar on

my chest. I reminded him of the surgery and he said " I can't keep up

with all your illnesses " . That really hurt. I guess since i'm not in

a wheelchair right now, my family doesn't think my pain is real. I

have been in a wheelchair before when I was recovering form ankle

surgery and it was very hard work getting myself to school and work.

My daughter is usually very supportive but I know she gets tired of

always being the one I have to lean on. At least I can say that my

illnesses have caused me to be more compassionate for others.

>

> Hi ,

>

> Sorry to hear about your friend's shallow comments!! It is usually

> the ones that make such remarks would make the worst patients

> themselves. But I do understand how much this must hurt you.

> I am from a big family but when I was most in need, there were only

> a few that helped us out. I also have my youngest daughter who has a

> rare autoimmune disorder where her antibodies kill off her blood!!!

> when it reacts it is so frightening and I worry so much for her.

> When she is in hospital having tranfusions, she tells me she feels

> like such a fake, because she in not in pain like me !!

>

> Omg !!! She is such a sweet girl and has gone through so much in

> her 15years of life and seen so much suffering. I would give

> anything to have her illness and for her to have good health, but we

> don't have a say in these things.

>

> But I get very upset when some family members don't bother to just

> pick up the phone and see how she is !!!

>

> It really makes you realise who the real caring people are in our

> lives. Maybe the others just don't know what to say, but I am lucky

> that the dear ones that care, say some lovely things to me and how I

> deal with things much better than they would in my situation, others

> just make you feel like you are a drama queen !!!

>

> But I always manage to have a laugh as it really is the best

> medicine !! Even if it is at my own expense !!!

>

> I really hope your friend sees the light and contacts you to

> see how you are and I hope you get some good answers on your

> condition. Hang in there, you are amongst friends on this support

> line.

>

> Take care, .

>

>

> >

> > I am there with all of you as well, and as shallow as this may

> sound I have addressed this subject here before and recieved much

> support. I am glad its being addressed again as well and think it

> should be often. Its a problem I feel all of us are going through. I

> have been dealing with alot of pain lately. All blood work negative

> at this point, first was being treated for RA, then was told could

> be Lupus...I went to the doctor just yesterday and told her that

> when she told me Lupus on my last visit everything else she said was

> irrelevent...She said to me listen, this is what I have on your

> chart...autoimmune inflammatory disease (meaning your body fights

> its self) with connective tissue disease...she told me she wasnt

> putting me in any category at this time as there are 100's out

> there. I really like her, I feel we are on the rght track with the

> meds, but back to family and friend support...when i hurt, i feel i

> should be able to talk to my best friends

> > about it..and maybe i do too much, with out a name for what i

> have drives me and its all i can think about...well, thursday i get

> an email from my best freind that our other friend said i should

> when drama queen of the year...and then she put LOL on the end. I

> emailed her back on how insensitive that was and I havent tt her

> since, no I am sorry, no I didnt mean to hurt your feelings,

> nothing...no understanding...maybe she is more in denial than i

> am...who knows..

> >

>

[Guest guest]

and Group

I know people especially distant family can be prettty shallow abou us

being with medical problems. and some can be ok about it. Oh but see

how your compassion is. How sweet you are . I comend each of you

that have compassion. CAuse people in the world have to suffer enough

with out idiots who are unkind and stupid about the people in pain.

God bless you brenda. I hope you have pain free days and I am so sorry

people can be so mean sometimes, my family gets that way but after 50

years of it I don't care anymore. Cause of sweet people like youl

hugs everyone

Clora

[Guest guest]

, Clora and my group,

Thank you for your understanding, it means the world to me..Im just not sure

If I should email my girlfriend first or let it ride, we have been friends for

many years and lost our mothers together as well as her husband at 42 to

lukemia...i think sometimes maybe she grows numb..Clora as far as my RA, no I

love her to death, she as saying she didnt want to pin point my diagnoses for

now because there are 100's of different Auto Immune diseases out there...The

more I read, the more they symptons seem to be so much alike, she has also

mentioned the psoriosis arthritis because of my rashes and my skin turning red

easily...but one thing after reading all of them..most of the treatment is the

same..and as far as that i think we are on the right track...Wishing you all a

pain free day and Clora good luck tomorrow...

[Guest guest]

I, for one, am really glad we have each other. We have compassion on

each other, and I thank each one of you for that. There are too many

people, " freinds " and relatives that are so insensitive and not

validating. Those persons just can's seem to understand the pain and

difficulties we have had to suffer already, and yet they add to it.

I Love ya all...

>

> and Group

> I know people especially distant family can be prettty shallow abou

us

> being with medical problems. and some can be ok about it. Oh but

see

> how your compassion is. How sweet you are . I comend each of

you

> that have compassion. CAuse people in the world have to suffer

enough

> with out idiots who are unkind and stupid about the people in pain.

> God bless you brenda. I hope you have pain free days and I am so

sorry

> people can be so mean sometimes, my family gets that way but after

50

> years of it I don't care anymore. Cause of sweet people like youl

> hugs everyone

>

> Clora

>

[Guest guest]

I TO AM GLAD FOR ALL THE NEW PEOPLE I CHAT WITH & SHARE MY ACHES & PAINS WITH.

THEY R KIND,COMPASSIONATE,SINCERE & LOVING WHEN RESONDING BACK TO ANY ?SSSS I

MIGHT HAVE.

THANKS TO ALL OF U,GOD BLESS,MELYNDAGAMEZ 7/29/08 11:05P.M.CENTRAL

[ ] Re: Loved ones and our illness

I, for one, am really glad we have each other.  We have compassion on

each other, and I thank each one of you for that.  There are too many

people, " freinds " and relatives that are so insensitive and not

validating.  Those persons just can's seem to understand the pain and

difficulties we have had to suffer already, and yet they add to it. 

I Love ya all...

>

> and Group

> I know people especially distant family can be prettty shallow abou

us

> being with medical problems. and some can be ok about it. Oh but

see

> how your compassion is. How sweet you are . I comend each of

you

> that have compassion. CAuse people in the world have to suffer

enough

> with out idiots who are unkind and stupid about the people in pain.

> God bless you brenda. I hope you have pain free days and I am so

sorry

> people can be so mean sometimes, my family gets that way but after

50

> years of it I don't care anymore. Cause of sweet people like youl

> hugs everyone

>

> Clora

>

------------------------------------