RA MAKES ME SOOOOOOO MAD!!!!

[Guest guest]

OK ... I'm so frustrated and mad with RA right now! I'm tired of being

tired and I'm tired of hurting!

A couple weeks ago I tried to have a fun day with my daughter riding horses

.... which is something we've been doing together for a couple years and I

absolutely love the time we get to spend together ... but, since my RA

diagnoses I've had a hard time having enough energy. A couple weeks ago I

had to stop and just watch (after sitting in my car and crying) because I

just couldn't do any more. It was still great to watch my daughter, but

nothing like sharing the fun with her.

And tonight ... I just tried to carve a small pumpkin with my son. By

small, I mean the diameter is only about 6-8 inches. I had the hardest time

even cutting the top off! My hands are killing me now. After cutting it

off and emptying the " guts " I had to tell my son we would have to wait to do

any more.

I know things will get better once I'm on the right meds, but I'm so just

freaking angry right now!!! I feel like I'm losing time with my husband and

both of my kids!!! I don't really want to say " why me " because if it wasn't

me it would have to be someone else and I don't wish this on anyone. But

.... why does it have to be so hard?!?!

Have others of you gone through this type of anger, frustration, pity ...

whatever you want to call it??? What did you do to help get past it?

Thanks for letting me vent .......

[Guest guest]

Oh, I hear ya, sister. I'm on Orencia/Mtx. While it makes me able to

do my job and mommy stuff my hands still hurt. They probably always

will as I have " significan damage " whatever that is. All I know is

they hurt all the time.

Finding energy, choosing what I can & can't do, doing stuff with the

kids, anger, frustration ... yup. I keep telling myself that my

personal Higher Power won't give me more than I can handle so I just

keep right on going like the Energizer Bunny.

I used to take the kids riding on 4 wheeler trails. I can't hold the

throttle in on the 4 wheeler anymore. We used to geocache much more

than we do now as I don't have the energy to do the walking to find

the harder caches in our area. Having to slow down is really a tough

sticky pill to swallow.

I am not afraid to adapt & improvise though. For pumpkins this year I

bought a battery powered " mini sawz-all " . It was on sale in the

Halloween aisle. It worked great! I taped a washcloth around the

handle to make the handle bigger. We carved pumpkins galore last year

and have 4 big ones to do later this weekend. The kids get tickled

because they used to get their pumpkins carved up faster than I did

but Mom has Power Tools now. I win for a change because the little

saw does all the cutting- I just hold it in place and follow the

lines. I don't like gettin' punkin guts on my so my kids do that.

I still have all these emotions. Even now that i'm not hurting nearly

as bad. I give myself a day a week to let it out by crying, hollering

when the kids aren't home, singing loudly, mostly having a good cry.

This will sound weird but i like to take walks in some of the local

cemeteries. They are peaceful and quiet. The ones that i like have

small benches scattered around to sit on. It is great yeararound to

spend a couple of hours sitting in the sun watching birds and

squirrels, an occasional deer, butterflies, you name it... That does

a lot for my soul and attitude. Now I wish I had time to go do this

on this weekend!

In time your Dr and you will find the right combo of meds. When that

happens you will be able to ride again. You may need a step to help

get up from now on but we all have to make adjustments to continue

doing that which we love doing. For example I used to deer hunt by

sitting on the ground at the base of a tree and just wrapping up in a

blanket for warmth. Not anymore. I now set up 2-3 weeks in advance by

taking my big camp chair and large cube blind. I still take my

blanket but the blind blocks the cold wind and gives me room to stand

and stretch.

Last week we went to practice accuracy shooting since deer season is

coming up next month. Sitting in the warm sun on a beautiful day...

seeing my accuracy is still right on the money... knowing my skills

wiht my shotgun haven't been affected by the stupid RA ... Having one

fabulous day has kept my spirits up.

Dalanne

>

> OK ... I'm so frustrated and mad with RA right now! I'm tired of

being tired and I'm tired of hurting!

>

> A couple weeks ago I tried to have a fun day with my daughter

riding horses ... which is something we've been doing together for a

couple years and I absolutely love the time we get to spend

together ... but, since my RA diagnoses I've had a hard time having

enough energy. A couple weeks ago I had to stop and just watch

(after sitting in my car and crying) because I just couldn't do any

more. It was still great to watch my daughter, but nothing like

sharing the fun with her.

>

> And tonight ... I just tried to carve a small pumpkin with my son.

By small, I mean the diameter is only about 6-8 inches. I had the

hardest time even cutting the top off! My hands are killing me now.

After cutting it off and emptying the " guts " I had to tell my son we

would have to wait to do any more.

>

> I know things will get better once I'm on the right meds, but I'm

so just freaking angry right now!!! I feel like I'm losing time with

my husband and both of my kids!!! I don't really want to say " why

me " because if it wasn't me it would have to be someone else and I

don't wish this on anyone. But ... why does it have to be so hard?!?!

>

> Have others of you gone through this type of anger, frustration,

pity ... whatever you want to call it??? What did you do to help get

past it?

>

> Thanks for letting me vent .......

[Guest guest]

KD,

I don't have small children or a spouse but I really feel for

everyone with disabilities or pain and can't do what " normal " moms

and dads do. It is so hard on you and your family.

This disease puts so much stress on our bodies and minds. I have

good days, bad days and some days are a mixture of both. I don't

even like myself at times.

This is a good place to vent and I know everyone is sharing your

frustrations and anger with you. I truly hope that you are feeling

better and able to do more very soon.

Shirley

>

> OK ... I'm so frustrated and mad with RA right now! I'm tired of

being

> tired and I'm tired of hurting!

>

> A couple weeks ago I tried to have a fun day with my daughter

riding horses

> ... which is something we've been doing together for a couple

years and I

> absolutely love the time we get to spend together ... but, since

my RA

> diagnoses I've had a hard time having enough energy. A couple

weeks ago I

> had to stop and just watch (after sitting in my car and crying)

because I

> just couldn't do any more. It was still great to watch my

daughter, but

> nothing like sharing the fun with her.

>

> And tonight ... I just tried to carve a small pumpkin with my

son. By

> small, I mean the diameter is only about 6-8 inches. I had the

hardest time

> even cutting the top off! My hands are killing me now. After

cutting it

> off and emptying the " guts " I had to tell my son we would have to

wait to do

> any more.

>

> I know things will get better once I'm on the right meds, but I'm

so just

> freaking angry right now!!! I feel like I'm losing time with my

husband and

> both of my kids!!! I don't really want to say " why me " because if

it wasn't

> me it would have to be someone else and I don't wish this on

anyone. But

> ... why does it have to be so hard?!?!

>

> Have others of you gone through this type of anger, frustration,

pity ...

> whatever you want to call it??? What did you do to help get past

it?

>

> Thanks for letting me vent .......

>

>

>

[Guest guest]

Awww, KD (((((Hugs))))) I am so sorry you are having such a hard time

of things, but please know you are NOT alone in these feelings. There

have been many a time when the simplest of things would stop me in my

tracks. The one thing I have learned is that I have to be creative as

there are sometimes different ways to do the things we used to do with

ease. Have you tried an electric carving knife on the pumpkin? How

about a different kind of saddle for riding? Big handles, tennis balls

- you get the idea - get creative. I've determined to make this a

challenge rather than a detriment.

I still get very upset and angry from time to time, that's just part

of the disease, I think. There are times when I come across things

that I just can't do anymore - at all. That's when I try to accept

those things I can't change. Someone mentioned " The Spoon Theory " one

time and I think that helped alot with the times when we are just too

tired to do anything.

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

From this I learned that planning ahead is a big help. If I know that

I'll need X-amount of energy on a specific day in order to do Y, then

I'll try to plan ahead and do as much as I can before that day arrives

so that my energy can be saved for just doing Y.

I hope this makes sense. Venting here is also a big help. Hang in

there.........Doreen

>

> OK ... I'm so frustrated and mad with RA right now! I'm tired of

> being tired and I'm tired of hurting!

>

> A couple weeks ago I tried to have a fun day with my daughter

> riding horses ... which is something we've been doing together for

> a couple years and I absolutely love the time we get to spend

> together ... but, since my RA diagnoses I've had a hard time having

> enough energy. A couple weeks ago I had to stop and just watch

> (after sitting in my car and crying) because I just couldn't do any

> more. It was still great to watch my daughter, but nothing like

> sharing the fun with her.

>

> And tonight ... I just tried to carve a small pumpkin with my son.

> By small, I mean the diameter is only about 6-8 inches. I had the

> hardest time even cutting the top off! My hands are killing me

> now. After cutting it off and emptying the " guts " I had to tell my

> son we would have to wait to do any more.

>

> I know things will get better once I'm on the right meds, but I'm

> so just freaking angry right now!!! I feel like I'm losing time

> with my husband and both of my kids!!! I don't really want to say

> " why me " because if it wasn't me it would have to be someone else

> and I don't wish this on anyone. But ... why does it have to be so

> hard?!?!

>

> Have others of you gone through this type of anger, frustration,

> pity ... whatever you want to call it??? What did you do to help

> get past it?

>

> Thanks for letting me vent .......

>

[Guest guest]

Doreen... thank you so much!! That is the first time I have read the spoon

theory and I really liked it! It makes so much sense.

Thank you all for your kind words and hugs. I am actually feeling a little

better today. I took a nap when I felt tired so that I will have more

energy when my kids get out of school.

You are all a wonderful group!!!

HUGS

KD

On Thu, Oct 23, 2008 at 12:10 PM, Mimi <mimi212@...> wrote:

> Awww, KD (((((Hugs))))) I am so sorry you are having such a hard time

> of things, but please know you are NOT alone in these feelings. There

> have been many a time when the simplest of things would stop me in my

> tracks. The one thing I have learned is that I have to be creative as

> there are sometimes different ways to do the things we used to do with

> ease. Have you tried an electric carving knife on the pumpkin? How

> about a different kind of saddle for riding? Big handles, tennis balls

> - you get the idea - get creative. I've determined to make this a

> challenge rather than a detriment.

>

> I still get very upset and angry from time to time, that's just part

> of the disease, I think. There are times when I come across things

> that I just can't do anymore - at all. That's when I try to accept

> those things I can't change. Someone mentioned " The Spoon Theory " one

> time and I think that helped alot with the times when we are just too

> tired to do anything.

> http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

> From this I learned that planning ahead is a big help. If I know that

> I'll need X-amount of energy on a specific day in order to do Y, then

> I'll try to plan ahead and do as much as I can before that day arrives

> so that my energy can be saved for just doing Y.

>

> I hope this makes sense. Venting here is also a big help. Hang in

> there.........Doreen

>

>

>

>

[Guest guest]

I also know exactly were your coming from...I too feel very frustrated

with this illness..I believe my meds are not doing enough, Im scared of

the next step...One thing this great group from people going through

the same thing.. we are not alone...hang in there..

diane from ohio

[Guest guest]

KD,

I know how you feel, we all do. I hope when you find the right meds,

you'll start feeling better. I have severe RA, and to be honest, I

haven't gotten over the frustration. Its really hard to live with any

chronic disease. I still have lots of pain, and if I do anything, my

hands and fingers hurt very badly. We all have bad days, but when there

is a good day, take advantage of it.

I do cry, and I also thinks sometimes, " why me. " But, I just learn to

deal with it. There are days, I want to just lay in bed, and never get

up. But, I can't, I have a daughter to raise. So, I hold on to that,

and try to be a good mom.

I've had RA for quite awhile, but never knew. I was dx seven years ago.

In the seven years, I've learned to pace myself. I can't do some things

I use to. Whe I plan something with family, I try to get extra rest,

and enjoy.

Your doing one good thing, finding information, and talking with others

about the disease. You will learn lots, and tips to make life easier

for you. It will get easier for you. Your still going to have bad

days, but you will get through it. Were always here to lend a ear.

You vent anytime, Tawny

>

> OK ... I'm so frustrated and mad with RA right now! I'm tired of being

> tired and I'm tired of hurting!

>

> A couple weeks ago I tried to have a fun day with my daughter riding

horses

> ... which is something we've been doing together for a couple years

and I

> absolutely love the time we get to spend together ... but, since my RA

> diagnoses I've had a hard time having enough energy. A couple weeks

ago I

> had to stop and just watch (after sitting in my car and crying)

because I

> just couldn't do any more. It was still great to watch my daughter,

but

> nothing like sharing the fun with her.

>

> And tonight ... I just tried to carve a small pumpkin with my son. By

> small, I mean the diameter is only about 6-8 inches. I had the hardest

time

> even cutting the top off! My hands are killing me now. After cutting

it

> off and emptying the " guts " I had to tell my son we would have to wait

to do

> any more.

>

> I know things will get better once I'm on the right meds, but I'm so

just

> freaking angry right now!!! I feel like I'm losing time with my

husband and

> both of my kids!!! I don't really want to say " why me " because if it

wasn't

> me it would have to be someone else and I don't wish this on anyone.

But

> ... why does it have to be so hard?!?!

>

> Have others of you gone through this type of anger, frustration, pity

....

> whatever you want to call it??? What did you do to help get past it?

>

> Thanks for letting me vent .......

>

>

>