Re: Emotional Issues- Barbara

[Guest guest]

Thank you Barbara- you are one of the brightest spots in my day. I have never

met you and most likely never will- but you important to me and remind me that

this is 'do-able' and why.

 

Gentle hugs, in SC

Hi Katrina.

 

I know just how you are feeling with all you have to deal with.  Those awful

days trying to live with RA and the God awful pain and suffering.  I will be 71

in Jan. and got diagnosed with RA 7 years ago.  It came out of the blue and

with in 5 days I went from a totally functioning woman, to someone who could

not do the simplist things.  I could not get out of bed alone, I could not

dress myself, feed mysellf, brush my teeth, and oh so many more.  I thought I

had a brain tumor.  It was a bitter cold snowy winter on Cape Cod.  The temps

were in the teens.  The ground was so frozen and the snow too, it crunched when

you tried to walk.  My entire body was riddled with pain.  My hands swelled so

much that I could not open my hand or move it.  My feet and ankles were in so

much intense pain, that I could not walk or stand on them.  I was totally

bedridden until I could see my Dr. the next day.  I tried to use my crutches

but I could not use my

hands for support.  I literally draged myself on the crutches, how I don't

know.  My Dr. was so shocked when he saw me.  He said now I know why you have

been so sick this last year.  Right away he said RA and I did not know what

that was.  He sent me to a Rheumy that day, she did blood work etc.  She gave

me 2 shots of Pred. and a RX to begin on a very high dose.  She then gave me a

MTX injection.  She called in a few day to confirm the RA diagnosis.  It hit

me hard and fast.  So I do know the pain and dispair you are feeling right

now.  I looked up RA on the computer, read a few lines, got terrified, then

shut it off.  I have never looked it up again. 

 

My feet, ankles, hands, wrists were struck the worse.  I was in a terrible

state and felt like my life was truly over.  I did so many things, all crafts,

walked 5 miles each day, went shoping, out to lunch etc.  Well, that all came

to a halt.  No one could understand what I was dealing with, and the pain was

taking over my life.  I had lots of time to seriously think about what my life

had become.  First, I tried to explain to friends, family, and my husband.  I

think they were brain dead when I tried to explain RA and the pain I was in. 

But, they all said, " You look so healthy, are so beautiful, just take a pill and

you will be fine " .  Right!!!  Wish it was that simple.  So I began to plan my

life and days around RA.  This is what has worked so well for me.  I hope this

helps you so much as it did me.

 

1.  I started to tell everyone I could not go shopping for any length of time

as my feet and ankles were just to painful.  It was hard for me to tell them

all this.  I hated to say no, but I did.

 

2.  I could not go to the beach at all as walking on the sand was too painful

and I was afraid of falling.  So I would go and sit in my car for a bit.  They

had put in a nice boardwalk, so I would walk to the end and set my chair in the

sand.  My friends walked me to the water so I could swim, and they helped me

get out also.

 

3.  My house was falling apart and I hated that the most.  i loved my home and

the way I decorated it etc.  I made a mental plan of what I could do.  I now

chose one task to do each day and still do.  One day I would dust, the next I

would vac. etc.  My Rheumy told me I had to pace myself which was very hard for

me to do.  I always did everything no matter what.  She also insists I lie

down each afternoon and rest or sleep, which I do.  I would get so tired I

could hardly stand up.

 

4.  If I go shoping, I use the handicap carts as I could not walk the big

stores.  People do help me if I need something from a top shelf.  I remain

independent by doing all this.  These carts have made my life so much easier. 

If I go to a store that does not have them, I limit my time to shop for 1 hour.

 

When I lived on the Cape, I walked each and every day no matter what the weather

was.  I walked about 5 miles every day.  I moved here to Florida as my Dr.

told me I would feel so much better in this climate.  That really did help

me.  But I needed new knee's which I have had them both totally replaced, and a

new hip replacement also.  All in 4 years.  I could not walk down here because

my feet were just so awful and I was riddled with 24/7 pain.  I have just

started to do my walking each day.  I walk 15 min. to begin with.  I am going

at this very slowly. I am just happy I can do the 15 min. walk.

 

When I wake in the morning, before I get up, I make a daily plan for myself. I

made up my mind, that I can't do the things I did before, but I can do them,

just in another way.  This works so well for me.  Today I am doing my wash,

drying it and folding it and putting it away.  I also made my bed.  Tomorrow I

will dust and wax my furniture, and Thurs. I will vac.  I did sit yesterday and

address all my Christmas cards, will do the inside another day.  I still can't

sit too long as I get so stiff and it is hard to move again.  I am a folk art

painter and I used to sit all day and paint, but can't do that anymore.  So, I

paint just an hour.  At least I can now sit and paint.

 

My spirit was renewed when I changed my life to accomadate my RA.  I am just so

happy I can do things.  You will see how it makes you feel when you change your

life around.

 

Now, for over 1  1/2 years I have been in a medicine induce remission.  I also

had foot surgery to remove a large RA nodule from my foot.  The Dr. did a nerve

test on both feet and I have Neuropathy, which was very painful on already

painful feet.  He had me start on B12 vitamin to see if it helped the

Neuropathy, and it sure has.  No pain in my feet anymore.  God, it was pure

happiness to be free at last from all that pain and suffering.  Everyone here

in our wonderful group knows how much I have suffered with my feet.  There were

days I could not stand on them or bear the pain.  It was making me crazy.  I

was bedridden and only got up for the bathroom.  I hated to even do that!!! 

On a pain level, they were a " 20 " .  I would have liked to chop them off many a

day.

 

Now I am back to myself and very grateful for all this.  I truly never thought

I would see the day I was totally pain free.  It amazes me still.

 

One of the most important things you have done for yourself is join our

wonderful group.  They have been so supportive and caring of me since the day I

joined. EVERYONE knows your pain, your suffering, how you feel mentally and

physically.  What a 24/7 living with RA is.

 

I hope you can dust yourself off, and begin a new life for yourself.  It takes

a lot but we are much stronger then you think.  I just know I wanted to live

and do the best I can while I am dealing with this ugly, beast of a disease. 

I hated to ask anyone for help etc.  But, you can.  You will find the children

will do a lot for you, just ask them.  If you read to them, have them sit

comfortably with you and read.  I play with my Granddaughters, 3 and 4, when I

go home.  I lie down each afternoon, I read to them, play with them on the bed,

and we have such a good time together.  When I was on my cane, Lexie would run

and get it for me.  If I needed something one or the other would get it for

me.  I took them to the park, but sat and watched them play etc. Before I would

be right there beside them etc.

 

I know my letter is long, but I just wanted you to know, we have many options

to do things, more then you thought.  Children are just so loving, great

little people.  All we can do, is what we can do.  Don't worry about your

husband.  Take him to your Rheumy appt. so he can hear what the Dr. has to say

etc.  Ask him to do more for you until things settle down.  24/7 pain can just

make you crazy.  Don't worry about if he is carrying too much on his

shoulders.  We marry for better or worse.  If he were sick, you would do what

you could for him.

 

You just need to have your life back.  You have to heal inside before you heal

outside.  My wish for you is that you have better days ahead, get your RA under

controll and to be pain free.

 

Please remember we are all suffering with RA and know how your days go.  We do

walk in your shoes.  God Bless you and I truly hope things begin to go better

for you.  We are not alone, we have the most wonderful, caring, and loving

people here.  I am glad you wrote your letter to us so we can help you and

support you.  There will be better days ahead.

 

Gentle hugs to you.

 

Barbara

[Guest guest]

> 3.  My house was falling apart and I hated that the most.  i loved my home

and the way I decorated it etc.

>I made a mental plan of what I could do.  I now chose one task to do each day

and still do.

>One day I would dust, the next I would vac. etc.  My Rheumy told me I had to

pace myself which was very hard for me to do.

>I always did everything no matter what.  She also insists I lie down each

afternoon and rest or sleep, which I do.

>I would get so tired I could hardly stand up.

I can so much relate to this. I started a repair / remodel project on

my kitchen 2 year ago. I was feeling better at that time and made

some progress at first, but since I had some flare up's and injured my

shoulder, so I have seemed to need to pace myself more. Now I seem to

get 1 small project done per day at best and have half of a

(non-functional) kitchen, and most of the time I lack the energy to

make any real progress on it. My dad helps me with it, but much of it

requires 2 people. I can't wait to get a kitchen back again, I have

been cooking outside on the gas grill for 2 years.

Much of the time I physically manage pretty well if I pace myself, but

that really means that I don't get any big projects done. So

emotionally it is very un-rewarding to pace myself, as it feels like I

just keep up at best, but don't feel like I get ahead.

For the past several months, Fatigue has really hit me more and I have

had to lay down for a break for about a hour in the middle of the day

or I just won't make it though the day. I don't really like doing

this, but have been so tired and worn out that it has not been that

hard to do.

I'm feeling a little bit better today and am going to try and get a

few more plants put away in the garage. I still have a lot of pots

outside that need to go in for the winter. I am in Wisconsin, so

there could be snow at any time. I am lucky it has held off this

long.

I did allow my doctor to give me the flu shot, I wasn't going to get

it again, but he really wanted me to since I have asthma. He said if

you didn't react to it in the past, it isn't very likely to react now.

I know that's not quite true with the new swine flu part of the shot

- i.e. that introduces a new component.

What I wanted to say is just that it has been about 3 weeks since I

had my flu shot and I have been really extra low on energy. I don't

know if it was just a coincidence or if the flu shot had something to

do with it, but I have just not been able to get up the energy in the

past 3 weeks to do much anything. At best, I get an hour of energy

now and then to get some work done on something, but then am worn out

again.

Has anyone else felt like they had side effects (fatigue / worn out /

tired) that might be from the flu shot?

[Guest guest]

Hi Chris.

 

You are most welcome.  I am glad my post today helped you.  I know it is very

hard to change things in our lives, but we must to deal with RA.

 

I hope you are feeling better and that your RA is improving.  It all just takes

times.  I know we are all in a hurry to feel better.

 

Wishing you better day ahead, and pain free too.

 

Hugs,

 

Barbara

Hi Katrina.

 

I know just how you are feeling with all you have to deal with.  Those awful

days trying to live with RA and the God awful pain and suffering.  I will be 71

in Jan. and got diagnosed with RA 7 years ago.  It came out of the blue and

with in 5 days I went from a totally functioning woman, to someone who could

not do the simplist things.  I could not get out of bed alone, I could not

dress myself, feed mysellf, brush my teeth, and oh so many more.  I thought I

had a brain tumor.  It was a bitter cold snowy winter on Cape Cod.  The temps

were in the teens.  The ground was so frozen and the snow too, it crunched when

you tried to walk.  My entire body was riddled with pain.  My hands swelled so

much that I could not open my hand or move it.  My feet and ankles were in so

much intense pain, that I could not walk or stand on them.  I was totally

bedridden until I could see my Dr. the next day.  I tried to use my crutches

but I could not use my

hands for support.  I literally draged myself on the crutches, how I don't

know.  My Dr. was so shocked when he saw me.  He said now I know why you have

been so sick this last year.  Right away he said RA and I did not know what

that was.  He sent me to a Rheumy that day, she did blood work etc.  She gave

me 2 shots of Pred. and a RX to begin on a very high dose.  She then gave me a

MTX injection.  She called in a few day to confirm the RA diagnosis.  It hit

me hard and fast.  So I do know the pain and dispair you are feeling right

now.  I looked up RA on the computer, read a few lines, got terrified, then

shut it off.  I have never looked it up again. 

 

My feet, ankles, hands, wrists were struck the worse.  I was in a terrible

state and felt like my life was truly over.  I did so many things, all crafts,

walked 5 miles each day, went shoping, out to lunch etc.  Well, that all came

to a halt.  No one could understand what I was dealing with, and the pain was

taking over my life.  I had lots of time to seriously think about what my life

had become.  First, I tried to explain to friends, family, and my husband.  I

think they were brain dead when I tried to explain RA and the pain I was in. 

But, they all said, " You look so healthy, are so beautiful, just take a pill and

you will be fine " .  Right!!!  Wish it was that simple.  So I began to plan my

life and days around RA.  This is what has worked so well for me.  I hope this

helps you so much as it did me.

 

1.  I started to tell everyone I could not go shopping for any length of time

as my feet and ankles were just to painful.  It was hard for me to tell them

all this.  I hated to say no, but I did.

 

2.  I could not go to the beach at all as walking on the sand was too painful

and I was afraid of falling.  So I would go and sit in my car for a bit.  They

had put in a nice boardwalk, so I would walk to the end and set my chair in the

sand.  My friends walked me to the water so I could swim, and they helped me

get out also.

 

3.  My house was falling apart and I hated that the most.  i loved my home and

the way I decorated it etc.  I made a mental plan of what I could do.  I now

chose one task to do each day and still do.  One day I would dust, the next I

would vac. etc.  My Rheumy told me I had to pace myself which was very hard for

me to do.  I always did everything no matter what.  She also insists I lie

down each afternoon and rest or sleep, which I do.  I would get so tired I

could hardly stand up.

 

4.  If I go shoping, I use the handicap carts as I could not walk the big

stores.  People do help me if I need something from a top shelf.  I remain

independent by doing all this.  These carts have made my life so much easier. 

If I go to a store that does not have them, I limit my time to shop for 1 hour.

 

When I lived on the Cape, I walked each and every day no matter what the weather

was.  I walked about 5 miles every day.  I moved here to Florida as my Dr.

told me I would feel so much better in this climate.  That really did help

me.  But I needed new knee's which I have had them both totally replaced, and a

new hip replacement also.  All in 4 years.  I could not walk down here because

my feet were just so awful and I was riddled with 24/7 pain.  I have just

started to do my walking each day.  I walk 15 min. to begin with.  I am going

at this very slowly. I am just happy I can do the 15 min. walk.

 

When I wake in the morning, before I get up, I make a daily plan for myself. I

made up my mind, that I can't do the things I did before, but I can do them,

just in another way.  This works so well for me.  Today I am doing my wash,

drying it and folding it and putting it away.  I also made my bed.  Tomorrow I

will dust and wax my furniture, and Thurs. I will vac.  I did sit yesterday and

address all my Christmas cards, will do the inside another day.  I still can't

sit too long as I get so stiff and it is hard to move again.  I am a folk art

painter and I used to sit all day and paint, but can't do that anymore.  So, I

paint just an hour.  At least I can now sit and paint.

 

My spirit was renewed when I changed my life to accomadate my RA.  I am just so

happy I can do things.  You will see how it makes you feel when you change your

life around.

 

Now, for over 1  1/2 years I have been in a medicine induce remission.  I also

had foot surgery to remove a large RA nodule from my foot.  The Dr. did a nerve

test on both feet and I have Neuropathy, which was very painful on already

painful feet.  He had me start on B12 vitamin to see if it helped the

Neuropathy, and it sure has.  No pain in my feet anymore.  God, it was pure

happiness to be free at last from all that pain and suffering.  Everyone here

in our wonderful group knows how much I have suffered with my feet.  There were

days I could not stand on them or bear the pain.  It was making me crazy.  I

was bedridden and only got up for the bathroom.  I hated to even do that!!! 

On a pain level, they were a " 20 " .  I would have liked to chop them off many a

day.

 

Now I am back to myself and very grateful for all this.  I truly never thought

I would see the day I was totally pain free.  It amazes me still.

 

One of the most important things you have done for yourself is join our

wonderful group.  They have been so supportive and caring of me since the day I

joined. EVERYONE knows your pain, your suffering, how you feel mentally and

physically.  What a 24/7 living with RA is.

 

I hope you can dust yourself off, and begin a new life for yourself.  It takes

a lot but we are much stronger then you think.  I just know I wanted to live

and do the best I can while I am dealing with this ugly, beast of a disease. 

I hated to ask anyone for help etc.  But, you can.  You will find the children

will do a lot for you, just ask them.  If you read to them, have them sit

comfortably with you and read.  I play with my Granddaughters, 3 and 4, when I

go home.  I lie down each afternoon, I read to them, play with them on the bed,

and we have such a good time together.  When I was on my cane, Lexie would run

and get it for me.  If I needed something one or the other would get it for

me.  I took them to the park, but sat and watched them play etc. Before I would

be right there beside them etc.

 

I know my letter is long, but I just wanted you to know, we have many options

to do things, more then you thought.  Children are just so loving, great

little people.  All we can do, is what we can do.  Don't worry about your

husband.  Take him to your Rheumy appt. so he can hear what the Dr. has to say

etc.  Ask him to do more for you until things settle down.  24/7 pain can just

make you crazy.  Don't worry about if he is carrying too much on his

shoulders.  We marry for better or worse.  If he were sick, you would do what

you could for him.

 

You just need to have your life back.  You have to heal inside before you heal

outside.  My wish for you is that you have better days ahead, get your RA under

controll and to be pain free.

 

Please remember we are all suffering with RA and know how your days go.  We do

walk in your shoes.  God Bless you and I truly hope things begin to go better

for you.  We are not alone, we have the most wonderful, caring, and loving

people here.  I am glad you wrote your letter to us so we can help you and

support you.  There will be better days ahead.

 

Gentle hugs to you.

 

Barbara