Re: So many questions about my R.A.

[Guest guest]

Hi there Cher! For the fatigue my doctor just recently prescribed Provigil for

me. I take 100mg per day and I'm awake all day.

Lori

http://home.comcast.net/~queenstitcher/

http://stitchingqueen.multiply.com

[Guest guest]

Get out of the pity party, it does NOT help! Find something that you

enjoy doing & can still do, and focus on how fun it is. You will feel

so much better doing something you enjoy. I personally like to sew,

so this last year I've made two quilts some tote bags and currently

custom kitchen curtains for a friend. Line up are some clothes for

my daughter & I. I feel a great sense of accomplishment & pride in

what I do. I think if you could find something to " lose yourself in "

you would feel better.

>

> Hello everyone. This is my first group,and maybe you can help me and

> maybe I can help you with questions and answers. My first big

question

> is - How does everyone handle the fatigue, awful exhaustion, just

> don't care-I am laying down attitude.The pain is a whole new world. I

> was diag. 3yrs ago. I have had to have a Total Hip Replacement and my

> right shoulder is going to have to have something done. I take MTX

> Humira B-12 Leucavorin, Folic Acid and for the pain Morphine Sulfate

> w/ MSIR's for break through pain. I get really depressed some days

and

> dive into the pity pot and just cry, I don't do anything anymore, I

> feel so guilty about my house work. It's not that I don't do it's

that

> I can't do it.

>

[Guest guest]

Hi, Cher! Welcome to the Group....sorry you have to be here. Sounds

like you are having a tough time. I have had RA since 1990; have had

both hips replaced (one year apart) and just had spinal fusion in

March. My husband divorced me last year...he couldn't handle my

ailments. So, I am forced to work (35 hours weekly) and don't bother

much about the housework...the cat doesn't complain. My job takes all

my effort, so I don't feel bad about doing the absolute minimum around

the apartment. gentle hugs! Marcia

>

> Hello everyone. This is my first group,and maybe you can help me and

> maybe I can help you with questions and answers. My first big question

> is - How does everyone handle the fatigue, awful exhaustion, just

> don't care-I am laying down attitude.The pain is a whole new world. I

> was diag. 3yrs ago. I have had to have a Total Hip Replacement and my

> right shoulder is going to have to have something done. I take MTX

> Humira B-12 Leucavorin, Folic Acid and for the pain Morphine Sulfate

> w/ MSIR's for break through pain. I get really depressed some days and

> dive into the pity pot and just cry, I don't do anything anymore, I

> feel so guilty about my house work. It's not that I don't do it's that

> I can't do it.

>

[Guest guest]

I was that way at the beginning of my diagnosis..yet then I realized stress and

feeling bad about it hurt me worse! Therapy and support groups are always a

great option! I'm not sure if its situational depression or a diagnosis of

depression, yet medications can help as well! As far as the fatigue, pace

yourself.  Do things even on days you don't feel well, because if we wait for a

" good day " we will be waiting forever! I still allow myself to try to enjoy

myself and do  hobbies that I enjoy.  Read something uplifting.  Don't beat

yourself up though! My last CBT doctor told me it's good to have a really good

cry every now and then and if there is a day I feel like staying in bed, to go

right ahead and do that! It's normal and human, but to not let myself get into a

rut or cycle where I did it all the time! Journaling is very helpful, watching

something funny, venting to us always helps! I also always try to remember that

there is always someone out

there worse than myself.  I also look to my role models, I always reference

Reeve.  This man was told he would never walk again.  He worked

every day for hours upon hours in therapy to get better, and he was able to do

things doctors thought impossible.  Modern medicine makes huge advances

everyday! There is hope that one day we might not be as we are now! Also, we are

much better off today with treatment than they were several years ago thanks to

those advances!

From: Jeanette <jhkerch@...>

Subject: [ ] Re: So many questions about my R.A.

Date: Thursday, June 19, 2008, 3:23 PM

Get out of the pity party, it does NOT help! Find something that you

enjoy doing & can still do, and focus on how fun it is. You will feel

so much better doing something you enjoy. I personally like to sew,

so this last year I've made two quilts some tote bags and currently

custom kitchen curtains for a friend. Line up are some clothes for

my daughter & I. I feel a great sense of accomplishment & pride in

what I do. I think if you could find something to " lose yourself in "

you would feel better.

>

> Hello everyone. This is my first group,and maybe you can help me and

> maybe I can help you with questions and answers. My first big

question

> is - How does everyone handle the fatigue, awful exhaustion, just

> don't care-I am laying down attitude.The pain is a whole new world. I

> was diag. 3yrs ago. I have had to have a Total Hip Replacement and my

> right shoulder is going to have to have something done. I take MTX

> Humira B-12 Leucavorin, Folic Acid and for the pain Morphine Sulfate

> w/ MSIR's for break through pain. I get really depressed some days

and

> dive into the pity pot and just cry, I don't do anything anymore, I

> feel so guilty about my house work. It's not that I don't do it's

that

> I can't do it.

>

[Guest guest]

hi cher,i believe everybody handles thier on issues with these disease

differently cuz we are all not the same as far as PAIN MANAGEMENT GOES.

HOWEVER,we r here to HELP those who might need to VENT!! CHER, if u sit around

all day then yes you're going to feel & have a PITY PARTY! get up MOVE the BEST

u can & enjoy for as long as u can!!!! DON'T consistently have PITY on yourself

cuz u need FAITH to get u through these TRIALS & TRIBULATIONS. I TAKE SOOO MANY

MEDICATIONS IT'S SO CRAZY! yes sometimes i want to do the same but i can't cuz i

have a FAMILY TO TAKE CARE OF. SOMETIMES MY LIL GIRL SEES ME & I HATE THAT &

THEN WHEN SHE ASK ME MOMMY WHATS WRONG WITH YOU & I SAY MOMMY'S A LIL CRAZY. one

thing though,cher never give up cuz god is right next to you & god wants u to b

HAPPY not sad!! GOOD LUCK IN WHATEVER U DECIDE, U CAN ALWAYS COME BACK TO THE

GROUP & MAYBE SOME OF US WILL STILL B HERE!!

god bless,melyndagamez 6/19/08 10p.m.central

[ ] Re: So many questions about my R.A.

Date: Thursday, June 19, 2008, 3:23 PM

Get out of the pity party, it does NOT help! Find something that you

enjoy doing & can still do, and focus on how fun it is. You will feel

so much better doing something you enjoy. I personally like to sew,

so this last year I've made two quilts some tote bags and currently

custom kitchen curtains for a friend. Line up are some clothes for

my daughter & I. I feel a great sense of accomplishment & pride in

what I do. I think if you could find something to " lose yourself in "

you would feel better.

>

> Hello everyone. This is my first group,and maybe you can help me and

> maybe I can help you with questions and answers. My first big

question

> is - How does everyone handle the fatigue, awful exhaustion, just

> don't care-I am laying down attitude.The pain is a whole new world. I

> was diag. 3yrs ago. I have had to have a Total Hip Replacement and my

> right shoulder is going to have to have something done. I take MTX

> Humira B-12 Leucavorin, Folic Acid and for the pain Morphine Sulfate

> w/ MSIR's for break through pain. I get really depressed some days

and

> dive into the pity pot and just cry, I don't do anything anymore, I

> feel so guilty about my house work. It's not that I don't do it's

that

> I can't do it.

>

     

[Guest guest]

Hi Cher

I'm sorry you're having such a rough time. With a chronic disease

like

RA, it's 'normal' to have times when you feel low and feel like

giving

up. A few suggestions from my own experience of 15 years of ReA:

- Depression: have you been screened for depression? It often goes

hand-

in-hand with coping with a chronic illness. I resisted but

eventually had to accept that I need to be on an antidepressant at

times.

- Pain: pain is felt more severely if a person is depressed or

anxious. You might feel better when you are less 'low'.

- Distraction techniques: if you can get absorbed in something you

enjoy, it really helps. Listen to music, knit, bake, do jigsaws, read

etc.

- Remember you could actually be worse off. I'm honestly not trying

to

sound preachy but we don't have terminal cancer (like my brother did)

and most of us can still shuffle around. (My Dad lost the use of his

legs a year ago, due to a rare spinal disdisorder.) Don't focus on

what

you've lost, but try and appreciate what you still can do.

- Volunteer for something: helping others will make you feel useful,

needed and generally terrific! There are lots of kinds of volunteer

work you can still do while unwell: try your local Arthritis Society

for starters.

- Grief: after having had RA for only 3 years, you're likely to still

be

coming to terms with having a chronic illness - i.e. grieving for

your old

life. There are books out there about coping with a chronic illness

that you

might find helpful.

Hang in there, ok

in NZ

-- In , " cher " <cherblue2002@...> wrote:

>

> Hello everyone. This is my first group,and maybe you can help me and

> maybe I can help you with questions and answers. My first big

question

> is - How does everyone handle the fatigue, awful exhaustion, just

> don't care-I am laying down attitude.The pain is a whole new world.>

[Guest guest]

Cher,

Welcome to the group. This grooup is amazing and extremely knowledable

with RA. Just remember, pain is a feeling...it is not who you are. I

can share with your struggles with depression and fatigue. I have

tried everything from routine excersise, energy drinks, energy shots,

vitamins, herbs and I have found nothing (except for ephedra, which is

banned) that helps combat the fatigue. My rheumy gave me a rx for

provigil, and I am excited to try it, but I have to pay out of pocket

for it since I don't have a sleep disorder. It's an expensive

medication, I should be able to get it next month.

With the depression, I would suggest medication and seeing a

therapist. You need to find who you are now, instead of looking for

who you were pre-RA. I have had RA for the past 7 years and

fibromyalgia 5 years. I thought that I accepted my pain conditions,

but now that I am going to therapy again...I really haven't. It is

really helping me to learn to love myself for who I am today. You are

still " you " , but you can't let your past dictate who you are, but let

it be part of who you are today. We are all here for you!!

>

> Hello everyone. This is my first group,and maybe you can help me and

> maybe I can help you with questions and answers. My first big

question

> is - How does everyone handle the fatigue, awful exhaustion, just

> don't care-I am laying down attitude.The pain is a whole new world. I

> was diag. 3yrs ago. I have had to have a Total Hip Replacement and my

> right shoulder is going to have to have something done. I take MTX

> Humira B-12 Leucavorin, Folic Acid and for the pain Morphine Sulfate

> w/ MSIR's for break through pain. I get really depressed some days

and

> dive into the pity pot and just cry, I don't do anything anymore, I

> feel so guilty about my house work. It's not that I don't do it's

that

> I can't do it.

>