Re: Emotional Issues

[Guest guest]

thanks geoff...well said...it helps to put things in perspective

susan

[Guest guest]

Hi Geoff. I wonder if you can give me your take on

something, since you seem to be well informed and able

to explain things very well.

I was thinking, when we (humans, people) spend a lot of

time dwelling on, thinking of, recalling negative

thoughts, this would produce " downer " type emotions,

right? If we are constantley in this state does it

stop or supress the production of brain chemicals like

serotonin? It makes sense to me but I don't know the

science. Maybe those sayings like " happiness is a

state of mind " are true. Maybe attitude adjustments

through counseling or " faith " are better than

anti-psychotic drugs. I was wondering if you knew

anything about it or could explain. Or how does

someone get themselves out of that frame of mind. I

know it can be hard.

Kimmie

rheumatic Emotional Issues

>

> Hi Gang! Geoff here.

>

> In the " Remicade " thread, Ethel mentioned to

> that she should be aware

> of " emotional issues " which may need to be addressed,

> a point with which

> concurred. I want to chime in on this with

> something normally

> overlooked.

>

> Emotions are inextricably linked to body chemistry,

> they do not exist

> independently. In fact, without body chemistry

> emotions do not exist at

> all.

>

> Near the turn of the 20th century, allopathy (Western

> medicine) embarked on

> a course of treating " mind and body " as if they were

> two separate entities

> occupying the same space. This paradigm allowed

> practitioners unable to

> deal with a problem to declare the problem did not

> exist and that it was

> " all in your head " , which in turn strengthened their

> positions as trained

> professionals by casting doubt on the untutored

> individual.

>

> Recently, there has been a turning toward the

> " holistic " approach which

> dictates the patient knows when they feel good and

> when they don't better

> than the doctor. And, the patient is a whole person,

> not a collection of

> disparate parts inconveniently arranged and ambulated

> from place-to-place

> under the control of some free-loading numb-nuts

> occupying space in the

> skull. It's about time.

>

> Your emotions are effected and guided by chemical

> activity. For a brief lay

> primer witness people as they become inebriated in

> your presence. Note the

> changes in their emotional behavior and psyche, think

> " happy drunk " , " angry

> drunk " and " insane drunk " . The outward signs of the

> chemistry of changing

> alcohol to sugar and water and the subsequent insulin

> shock is obvious even

> to the numb. (Or in the case of American Indians -

> not changing alcohol

> into sugar & water due to the absence of the enzyme

> necessary for conversion

> resulting in straight alcohol entering the brain.)

>

> How can any sane person see this and think it would

> not be so for any other

> food, drug, chemical, pollutant, etc.? The answer is

> simple, if one takes

> the time to think one realizes the obvious -- our

> emotional and psychologica

> l states are inextricably intertwined with our

> physical beings.

>

> Take note:

>

> You and your body are one.

>

> Detoxification can have far more beneficial effects

> than just making your

> " body " better. It will make " you " better. If you

> have emotional " issues "

> this is well worth noting.

>

>

> Geoff

> soli Deo gloria

>

> www.HealingYou.org

>

>

>

>

[Guest guest]

Constant stress produces chemical injuries in various parts of the body,

including the brain, that the immune system must deal with. Stress can take

the form of emotion upheaval, fear, anxiety, etc. Certain chemical

reactions can produce symptoms of negative emotions such as being morose,

and these in turn produce chemical and hormonal changes that are reacted to

as well. Anti-psychotic drugs are a prime example of this well-known

drug-emotion/drug-psyche interaction.

For a primer on foods, chemicals, minerals and vegetation which produce

psychological and / or emotional symptoms, read the homeopathic Materia

Medica, or in the alternative, pickup a lay persons guide to homeopathy in

any library.

The Materia Medica will list the item, e.g., lachesis, and it will list

psychological symptoms associated with that substance. If that substance is

taken in enough quantity, those are the symptoms that present (not in

homeopathic quantities.) Interesting are other symptoms as well. For

instance, some things might make one prefer to sleep on their right side, or

awaken predictably between 2:00 am and 4:00 am in the morning. Others might

produce breath which smells like sewage, and yet others sour breath.

The read thus approached is easy and interesting. It won't make anybody and

expert on anything, but it does help tie together how chemicals produce

reactions and how often emotional reactions could just as easily be

considered " physical " symptoms of the whole person.

To get out of the " blues " frame of mind, I recommend (this will sound weird

to some) juicing fresh, clean vegetables while at the same time avoiding

" comfort food " and foods known to aggravate symptoms or sedate, such as

simple sugars, followed over time by detoxification. The homeopathic book

may have some suggestions as well.

I have an entirely different POV regarding faith that is better taken up

off-list, lest I once again take a shot across the bow; I'm still mopping

up.

Geoff

Re: rheumatic Emotional Issues

> I was thinking, when we (humans, people) spend a lot of

> time dwelling on, thinking of, recalling negative

> thoughts, this would produce " downer " type emotions,

> right? If we are constantley in this state does it

> stop or supress the production of brain chemicals like

> serotonin? It makes sense to me but I don't know the

> science. Maybe those sayings like " happiness is a

> state of mind " are true. Maybe attitude adjustments

> through counseling or " faith " are better than

> anti-psychotic drugs. I was wondering if you knew

> anything about it or could explain. Or how does

> someone get themselves out of that frame of mind. I

> know it can be hard.

>

> Kimmie

[Guest guest]

Thanks Geoff :0)

<I have an entirely different POV regarding faith that

is> <better taken up

>

<off-list, lest I once again take a shot across the

bow; I'm <still mopping up.>

Understood. No Problem.

Kimmie

Re: rheumatic Emotional Issues

>

>

>> I was thinking, when we (humans, people) spend a lot

>> of

>> time dwelling on, thinking of, recalling negative

>> thoughts, this would produce " downer " type emotions,

>> right? If we are constantley in this state does it

>> stop or supress the production of brain chemicals

>> like

>> serotonin? It makes sense to me but I don't know

>> the

>> science. Maybe those sayings like " happiness is a

>> state of mind " are true. Maybe attitude adjustments

>> through counseling or " faith " are better than

>> anti-psychotic drugs. I was wondering if you knew

>> anything about it or could explain. Or how does

>> someone get themselves out of that frame of mind. I

>> know it can be hard.

>>

>> Kimmie

>

>

[Guest guest]

Thanks . I started practicing that today. I

hope I can stay on top of that. I think my biggest

problem emotionally is anger and at times I can feel a

rage inside. I have all the signs of hidden anger. I

have always suppressed it. It took me a long time to

realize it because I'm usually cheerful. I know how to

put on a happy face.

Kimmie

rheumatic Emotional Issues

>

>

> Self=talk is one way. Every time you have a

> negative thought, look for

> something positive. Eventually, it becomes a habit.

> Remember, every

> thought results in feelings which is reflected in

> each of our cells.

> Laughter builds up the immune system.

> HTH

>

> Or how does

>> someone get themselves out of that frame of mind. I

>> know it can be hard.

>>

>> Kimmie

>>

>>

>

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.289 / Virus Database: 265.4.6 - Release

> Date: 12/5/2004

>

>

>

>

[Guest guest]

rheumatic Emotional Issues

>

>

>>

>>

>> Self=talk is one way. Every time you have a

>> negative thought, look for

>> something positive. Eventually, it becomes a habit.

>> Remember, every

>> thought results in feelings which is reflected in

>> each of our cells.

>> Laughter builds up the immune system.

>> HTH

>>

>> Or how does

>>> someone get themselves out of that frame of mind.

>>> I

>>> know it can be hard.

>>>

>>> Kimmie

>>>

>>>

>>

>>

>>

>> --

>> No virus found in this outgoing message.

>> Checked by AVG Anti-Virus.

>> Version: 7.0.289 / Virus Database: 265.4.6 - Release

>> Date: 12/5/2004

>>

>>

>>

>>

[Guest guest]

Katrina,

Frustration doesn't even describe the anger I feel on most days. Yes, there are

some good days and I always overexert myself to the point that it takes two days

to recover in bed.  The worst part is the fatigue.  I nap daily because I need

to and that is not understood. I avoid a lot of activity that I used to do as

part of normal everyday living because I know I will swell and be in pain. It's

very painful to hear people make remarks because they are arrogant and do not

understand.

Heidi in Denver

From: fabrikate <oknala@...>

Subject: [ ] Emotional issues

Date: Wednesday, November 24, 2010, 2:45 PM

 

I was diagnosed with RA about 8 years ago. I also deal with diabetes

(type 2), OA, fibro, hypertension and problems with my spine that limit my

walking. People look at me and see nothing that looks out of whack and

immediately decide that there's nothing wrong with me, that I'm just making

excuses to not overexert myself to the point where I would need several days to

recover.

Am I the only one? Does anyone out there have the same frustrations? On good

days, I feel like I can take on the world, but on bad days, not so much.

How do you deal with the frustrations combined with constant pain? As the

saying goes - I can be in pain but I don't have to be one.

Katriina

[Guest guest]

Katriina,

I have a lot of the same issues. Finding the balance between getting enough done

and overdoing it is one of the toughest problems I have with RA right now. Also,

I HATE when I have to move slow and get 'the look'. I think we all have

experienced the whole " But you don't look sick " thing. I once had a cousin tell

me " Can't you just ignore it? " Napping for me is almost always a necessity, and

I do find that a good nap actually helps me sleep better at night.

in So Cal

Life may not be the party we hoped for,

but while we're here

we might as well dance.

From: oknala@...

Date: Wed, 24 Nov 2010 14:45:21 +0000

Subject: [ ] Emotional issues

I was diagnosed with RA about 8 years ago. I also deal with diabetes

(type 2), OA, fibro, hypertension and problems with my spine that limit my

walking. People look at me and see nothing that looks out of whack and

immediately decide that there's nothing wrong with me, that I'm just making

excuses to not overexert myself to the point where I would need several days to

recover.

Am I the only one? Does anyone out there have the same frustrations? On good

days, I feel like I can take on the world, but on bad days, not so much.

How do you deal with the frustrations combined with constant pain? As the

saying goes - I can be in pain but I don't have to be one.

Katriina

[Guest guest]

Katriina,

I have the same issues as well.  I have RA and periphreal neuropathy from the

RA., with pain, numbness and tingling in my toes and hands.  I have 2 or three

good days a week, and I have to really watch to not overdo it.  If I do, I hurt

so bad in the evening and at night I can't sleep even with my pain meds.  Last

night I couldn't get to sleep until 5am, and overdoing it for me is usually just

2 or three hours of housework-nothing strenuous.  My family often says " well

everyone has some pain, you just have to deal with it " .  So, I ask, does

everyone stay awake until 5am because of pain in my hands, feet, hips, elbows,

knees, and neck???  They shut up quick, usually.  Take care and hang in there,

there are many of us in pain all of the time...

.

[Guest guest]

Katrina,

Here are some good websites for people who have chronic illnesses that are

always noticable:

http://invisibleillnessweek.com/

http://www.butyoudontlooksick.com/

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory\

-written-by-christine-miserandino/

Sue L.

>

> I was diagnosed with RA about 8 years ago. I also deal with diabetes (type

2), OA, fibro, hypertension and problems with my spine that limit my walking.

People look at me and see nothing that looks out of whack and immediately decide

that there's nothing wrong with me, that I'm just making excuses to not

overexert myself to the point where I would need several days to recover.

>

> Am I the only one? Does anyone out there have the same frustrations? On good

days, I feel like I can take on the world, but on bad days, not so much.

>

> How do you deal with the frustrations combined with constant pain? As the

saying goes - I can be in pain but I don't have to be one.

>

> Katriina

>

[Guest guest]

Katrina,

I think we all go through those frustrations. Some days it really bothers me

what people think and on other days I have learned to blow them off. You can't

fix ignorance. LOL People will never understand what we go through unless they

go through it themselves. I know this from experience as I used to work in the

medical field and had deep compassion for people and what they were going

through. I also thought I knew how they felt when they told me they were in

pain. Boy was I wrong. I now know what true pain is on a daily basis. Wish I

could do patient care now more than ever because I can relate a lot better.

I think the best thing to do is focus on your own feelings and try to understand

that people mean well but just don't understand. We are always here and we do

understand so just know your not alone.

>

> I was diagnosed with RA about 8 years ago. I also deal with diabetes (type

2), OA, fibro, hypertension and problems with my spine that limit my walking.

People look at me and see nothing that looks out of whack and immediately decide

that there's nothing wrong with me, that I'm just making excuses to not

overexert myself to the point where I would need several days to recover.

>

> Am I the only one? Does anyone out there have the same frustrations? On good

days, I feel like I can take on the world, but on bad days, not so much.

>

> How do you deal with the frustrations combined with constant pain? As the

saying goes - I can be in pain but I don't have to be one.

>

> Katriina

>

[Guest guest]

I just tell people the truth- they either understand it, or not. When people

male statements like " You LOOK normal - I don't get it " . I just say " Sorry

there is no blood or broken bones to see. I have a serious auto immune disease

that leaves me exhausted all of the time. And just because I am not screaming,

doesn't mean that I don't hurt " . That usually does the trick.

 

Try the truth- it works, and if it doesn't- you have said your piece.

 

in SC

From: fabrikate <oknala@...>

Subject: [ ] Emotional issues

Date: Wednesday, November 24, 2010, 2:45 PM

 

I was diagnosed with RA about 8 years ago. I also deal with diabetes (type 2),

OA, fibro, hypertension and problems with my spine that limit my walking. People

look at me and see nothing that looks out of whack and immediately decide that

there's nothing wrong with me, that I'm just making excuses to not overexert

myself to the point where I would need several days to recover.

Am I the only one? Does anyone out there have the same frustrations? On good

days, I feel like I can take on the world, but on bad days, not so much.

How do you deal with the frustrations combined with constant pain? As the saying

goes - I can be in pain but I don't have to be one.

Katriina

[Guest guest]

Today is an awful day for me. I haven't had a flare up like this in maybe as

long as a year. I feel pain on a daily basis and I mostly just deal with it with

hydrocodone, gabapentin, and hot baths. I work full-time and by the time I'm off

I'm so tired and run down I'm mostly useless even though in my mind I'm overly

ambitious and genuinely motivated to have a better paying career as well as not

having this stupid disease.

I feel so defeated and depressed today. I don't feel like people understand and

it's frustrating by hearing " take pain Meds " well I do and it's such a painful,

deep, non-obvious pain that sometimes takes my breath away.

I hate if so much. I'm 32 and am so full of anger about this. I did far too much

in my house today just because I was so mad of looking like a lazy sloth. I WANT

to do stuff. There are many things I wanna go do. Like go visit with friends.

Play in the snow with my family. Go look at Christmas stuff, but I just sit here

and cry because I feel like a loser and sometimes I just want my partner to hold

me and just see how badly I hurt. I want to hear her genuine concern instead of

frustration and anger. I know it's so hard on her and I wish it were different.

She sits with me thru my Remicade treatments and is generally supportive, but

sometimes like today I know she wants me to go visit with friends but I don't

know her and I'm hurting and struggling a lot today.

I wish for a cure.

I'm so sad today.

Ps- thanks for reading.

Sent from my iPhone

[Guest guest]

            Hello , I am so sorry your having one of those

days. I am

sure that most of us on this list have been there and I think it is safe to say

we know how you feel. Here in northern Utah we have had several snow storms

moving through, the last one being a blizzard and we are expecting another storm

tonight through Monday late morning. Weather has a profound effect on my RA &

OA, my pain and stiffness multiplies by a factor of 5-10 depending on how fast

the barometer changes. Today has been one of those days for me too, I try not to

get depressed or stressed because it only makes the pain worse. I feel for you

and I will keep you in my prayers that things will get better for you. I do hate

this disease and sometimes get angry at it for taking the things I love to do

away from me, tomorrow if I am not to bad I will be playing in the church band

along with my son (a true blessing) I am truly grateful for still being able to

play guitar and piano. I try to be grateful for the things I am still able to do

rather than dwelling on the things that I can't. It's not always easy to be

grateful especially when the pain and stiffness sets in not to mention the

fatigue. My family is empathetic to my limitations and pain, but there are some

people that I wish I could change places with just for a day so they can know

what I go through on a daily basis. Sometimes my son will have pain in his back

and he asks me, " how do you deal with the pain? how do you do it? "  Sounds

kinda

funny but when he says this it makes me feel really good, not that his back

hurts but that he acknowledges my pain. Thank God for family and the people on

this group that are there for us when things seem hopeless and dark. It does

help to vent and this is a good safe place to vent and share with people who

have been there. Hope things get better for you.

                            .....Randy..... 

________________________________

From: Scherrer <hscerrer@...>

" " < >

Sent: Sat, November 27, 2010 2:36:38 PM

Subject: Re: [ ] Emotional issues

 

Today is an awful day for me. I haven't had a flare up like this in maybe as

long as a year. I feel pain on a daily basis and I mostly just deal with it with

hydrocodone, gabapentin, and hot baths. I work full-time and by the time I'm off

I'm so tired and run down I'm mostly useless even though in my mind I'm overly

ambitious and genuinely motivated to have a better paying career as well as not

having this stupid disease.

I feel so defeated and depressed today. I don't feel like people understand and

it's frustrating by hearing " take pain Meds " well I do and it's such a painful,

deep, non-obvious pain that sometimes takes my breath away.

I hate if so much. I'm 32 and am so full of anger about this. I did far too much

in my house today just because I was so mad of looking like a lazy sloth. I WANT

to do stuff. There are many things I wanna go do. Like go visit with friends.

Play in the snow with my family. Go look at Christmas stuff, but I just sit here

and cry because I feel like a loser and sometimes I just want my partner to hold

me and just see how badly I hurt. I want to hear her genuine concern instead of

frustration and anger. I know it's so hard on her and I wish it were different.

She sits with me thru my Remicade treatments and is generally supportive, but

sometimes like today I know she wants me to go visit with friends but I don't

know her and I'm hurting and struggling a lot today.

I wish for a cure.

I'm so sad today.

Ps- thanks for reading.

Sent from my iPhone

[Guest guest]

Dear Sweet ,

I am so sorry that you are suffering both physically and emotionally.  You are

not a lazy sloth.  This disease takes so much out of us in many ways.  Pain

can

drain the life out of us.  Know that you are not alone.  You are among

many who

have gone through or are still going through exactly what you are.  It is

nearly

impossible for people who do not have this disease to understand the toll it

takes on us.  Please do not be so hard on yourself.  Ask your partner for a

hug

or to hold you.  Tell others that that on a scale of 1-10 your pain is at 

an 11

or a 9 depending on your day.  Sometimes it's just easier. 

I, too, wish for a cure for you and for all of us.  Hang in there.  You are

worth it.

Jody in Schaumburg, IL  

 

________________________________

From: Scherrer <hscherrer@...>

" " < >

Sent: Sat, November 27, 2010 3:36:38 PM

Subject: Re: [ ] Emotional issues

 

Today is an awful day for me. I haven't had a flare up like this in maybe as

long as a year. I feel pain on a daily basis and I mostly just deal with it with

hydrocodone, gabapentin, and hot baths. I work full-time and by the time I'm off

I'm so tired and run down I'm mostly useless even though in my mind I'm overly

ambitious and genuinely motivated to have a better paying career as well as not

having this stupid disease.

I feel so defeated and depressed today. I don't feel like people understand and

it's frustrating by hearing " take pain Meds " well I do and it's such a painful,

deep, non-obvious pain that sometimes takes my breath away.

I hate if so much. I'm 32 and am so full of anger about this. I did far too much

in my house today just because I was so mad of looking like a lazy sloth. I WANT

to do stuff. There are many things I wanna go do. Like go visit with friends.

Play in the snow with my family. Go look at Christmas stuff, but I just sit here

and cry because I feel like a loser and sometimes I just want my partner to hold

me and just see how badly I hurt. I want to hear her genuine concern instead of

frustration and anger. I know it's so hard on her and I wish it were different.

She sits with me thru my Remicade treatments and is generally supportive, but

sometimes like today I know she wants me to go visit with friends but I don't

know her and I'm hurting and struggling a lot today.

I wish for a cure.

I'm so sad today.

Ps- thanks for reading.

Sent from my iPhone

[Guest guest]

Wow ,

As I read your post I couldn't believe just how you hit the nail on the head of

how I've been feeling.

Just 2 weeks ago I got to the point where I was ready to throw in the towel an

file for disability. I'm only 47, too young to think about quitting my job.

I know how difficult this is, I live on tramadol just to make it through the

work day. I save the oxycodone for at home. My bosses are threatening to let me

go because of too many mistakes made on the job. My doctor says my body is

trying to process the pain, thus causing me to make mistakes because of the

inability to concentrate. 5 years ago I was an Administrative Assistant for one

of our local non profits. Today I am a Receptionist for a law firm. I keep

trying to downgrade my positions to reduce stress as my pain increases.

I share your frustration with your house and not being able to go out and do

normal things. Pick and choose what you want to do. Rest up before, so you can

go even if it is for a short time. Learn to say no. I use to be the one that

everyone could count on to volunteer, or step in to help. I've learned to let

that go and pick & choose what I really want to do.

Talk with your Drs. They should be able to help with meds, therapy, aids, etc.

to get you through the flare. This illness is frustrating, but we here are

strong and determined. we haven't let RA stop us yet.

I hope you are feeling better soon. Hang in there, the flare will pass and you

will be back on your way to " your new normal " .

Betsy in the VI

>

> Today is an awful day for me. I haven't had a flare up like this in maybe as

long as a year. I feel pain on a daily basis and I mostly just deal with it with

hydrocodone, gabapentin, and hot baths. I work full-time and by the time I'm off

I'm so tired and run down I'm mostly useless even though in my mind I'm overly

ambitious and genuinely motivated to have a better paying career as well as not

having this stupid disease.

[Guest guest]

Hi heather,

I am 31 years old and was diagnosed with RA when i was 24.I have always been a

athletic person , but now sometimes i can barely tie my shoes or do simple tasks

around the house.My son is 5 years old and I just wish i could do more with

him....i am always so tired or in pain.You said it RA just sucks!!I am so sick

of people asking why i have arthritis and saying i am exagerating on the

terrible pain.I wish some people could live with this for just a couple of days

and see what we go thru.You are not alone heather we are all here with you.

take care

rob

From: hscherrer@...

Date: Sat, 27 Nov 2010 13:36:38 -0800

Subject: Re: [ ] Emotional issues

Today is an awful day for me. I haven't had a flare up like this in maybe as

long as a year. I feel pain on a daily basis and I mostly just deal with it with

hydrocodone, gabapentin, and hot baths. I work full-time and by the time I'm off

I'm so tired and run down I'm mostly useless even though in my mind I'm overly

ambitious and genuinely motivated to have a better paying career as well as not

having this stupid disease.

I feel so defeated and depressed today. I don't feel like people understand and

it's frustrating by hearing " take pain Meds " well I do and it's such a painful,

deep, non-obvious pain that sometimes takes my breath away.

I hate if so much. I'm 32 and am so full of anger about this. I did far too much

in my house today just because I was so mad of looking like a lazy sloth. I WANT

to do stuff. There are many things I wanna go do. Like go visit with friends.

Play in the snow with my family. Go look at Christmas stuff, but I just sit here

and cry because I feel like a loser and sometimes I just want my partner to hold

me and just see how badly I hurt. I want to hear her genuine concern instead of

frustration and anger. I know it's so hard on her and I wish it were different.

She sits with me thru my Remicade treatments and is generally supportive, but

sometimes like today I know she wants me to go visit with friends but I don't

know her and I'm hurting and struggling a lot today.

I wish for a cure.

I'm so sad today.

Ps- thanks for reading.

Sent from my iPhone

[Guest guest]

I totally get this -- people always ask me if I was an " athlete " when I was

younger. That's when I know they have no clue what I am talking about.

In a message dated 11/29/2010 7:13:01 A.M. Eastern Standard Time,

KEENOY13@... writes:

I am so sick of people asking why i have arthritis

[Guest guest]

Your post actually made me cry. I hate that I identify exactly with what you are

going through. I am 32 as well, and I see old ladies that move better than me. I

feel like I have no life. I feel like I let everyone down. I am on short term

disability, and on my good days, I go crazy cleaning, but I guess I pay for that

later. My husband has to work side projects to bring in income, because of the

disability. So...I feel that since he is extra busy, I need to do more around

the house. I also have two young girls. To help him out, I get them ready and

take them to school. Most people wouldn't have a problem with that. It HURTS to

dress them, it hurts to put my 2 year old in my car, I can't even open the door

at daycare some days. My 4 year old had to do it for me, very pathetic. Then I

had to go up 2 flights of steps. Why did I do this instead of my husband,

because he has enough on his plate, and I feel like I should.

My husband does understand what I'm going through, but he gets very frustrated

with me and the house not being cleaned, because he feels like he has enough on

his plate dealing with me and the kids.

I'm with you. I just want my life back.

*hugs* I'm here if you want to talk.

Missie- PA

>

> Today is an awful day for me. I haven't had a flare up like this in maybe as

long as a year. I feel pain on a daily basis and I mostly just deal with it with

hydrocodone, gabapentin, and hot baths. I work full-time and by the time I'm off

I'm so tired and run down I'm mostly useless even though in my mind I'm overly

ambitious and genuinely motivated to have a better paying career as well as not

having this stupid disease.

>

> I feel so defeated and depressed today. I don't feel like people understand

and it's frustrating by hearing " take pain Meds " well I do and it's such a

painful, deep, non-obvious pain that sometimes takes my breath away.

>

> I hate if so much. I'm 32 and am so full of anger about this. I did far too

much in my house today just because I was so mad of looking like a lazy sloth. I

WANT to do stuff. There are many things I wanna go do. Like go visit with

friends. Play in the snow with my family. Go look at Christmas stuff, but I just

sit here and cry because I feel like a loser and sometimes I just want my

partner to hold me and just see how badly I hurt. I want to hear her genuine

concern instead of frustration and anger. I know it's so hard on her and I wish

it were different. She sits with me thru my Remicade treatments and is generally

supportive, but sometimes like today I know she wants me to go visit with

friends but I don't know her and I'm hurting and struggling a lot today.

>

> I wish for a cure.

>

> I'm so sad today.

>

> Ps- thanks for reading.

>

> Sent from my iPhone

>

[Guest guest]

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]

Hi Everyone,

I know it has been a long time since my last post. But I have been following the

group and reading everyone's posts. I've seen that there are a lot of new

members, many who are going through some really rough times. It's sad that we

don't have to worry only about how RA is affecting our bodies, but our lives in

general. We have to deal with family, friends, even employers who don't

understand exactly what RA is and how it has impacted our lives as well as our

bodies.

So, after reading the posts from those of you who seem to be in the same dark

place I'm just finding my way out of, I decided it was time to give you all an

update on where I'm at. If you remember, the last time I posted I'd just lost my

job and my health insurance and had just started to long and stressful

Disability process. I'd been told by my attorney that in my state, the waiting

time to get a hearing was at least three years. I really, really tried to hold

onto my sense of humor but seeing no light at the end of the tunnel for so long,

even that deserted me. I'm single with adult children, and living alone. My only

source of income was gone and I was forced to rely on my children to help me

financially.

Books had always been a source of comfort for me, my mental escape when things

got rough. I was also a writer who couldn't write because my wrists and hands

were hit the hardest and most of the time refused to cooperate, not to mention

the pain. I couldn't read because it hurt too much to hold a book for any length

of time and I couldn't stay focused long enough to read. I felt that RA had

taken away everything that mattered to me. I saw myself as an emotional and

financial burden to my children. In short, I found myself in a very dark place

for a very long time, and had all but given up.

I honestly believe that reading posts from this group, knowing that I wasn't

alone was the only thing that got me through it.

But, things can and do get better. I discovered that by losing my job and not

being forced to push myself day in and day out for fear of losing that job (as a

secretary), the pain in my hands and wrists had improved. My disability was

approved. My attorney said he had never gotten anyone approved so quickly. No

doubt my age, my great family doctor and careful medical records were strong

points in my favor. But nevertheless, less than a year after I applied, it was

approved. The benefits I receive aren't great. My monthly income has been cut by

more than half but it pays the mortgage and utilities.

Shortly after I joined this group, someone posted something that I hadn't

forgotten. It's been along time and the words aren't the same, but the message

is still there. " We all want things to get back to normal. But the RA isn't

going to go away. We have to find our new normal and make it work for us. " So,

for who ever wrote that post – THANK YOU! It has taken me a while, but that is

what I've done. I'm back. I still have a long way to go but I'm getting there!

I discovered that all the pain medication I was on contributed to the mental

fog. Not working, I was able to cut back on the prescription pain meds and for

the most part go back to OTC, except on really, really, bad days. I have to pace

myself but I am writing again. No more long writing sessions like I used to put

in, writing when my hands allow, stopping to rest when it becomes painful. My

typing is terrible but that is what spellchecker and proof readers are for. If

and when my hands get worse and I can no longer type at all, I'll go with the

voice recognition software (also learned about on this group). And, then I

learned that Amazon now allowed authors to put their own work up for sale as

Kindle ebooks. My previously published stories were just sitting on my computer

doing nothing for me so I figured I had nothing to lose by giving it a shot and

maybe generate a little extra income in the process. Who knows? At the very

least, it has given me back a bit of control in an important part of my life, my

reason to get up each morning.

The point I'm trying to make is that RA affects us all in different ways, in

varying degrees. The various medications will affect each one of us differently.

What works for one might not work for another, or the side effects, if any, will

be different. That information can all be found here, shared by someone.

But, in many ways we are all the same – our health, our bodies, our lives, and

our personal relationships have all been impacted by this terrible disease.

Somehow, someway, we all have to hang in there and find that new normal and make

it work. We have to focus on positive things we still have in our lives, rather

than what we feel we've lost. And when things get rough, it's important to have

some place where we can share with others in the same position. We need to know

that we are not alone, that there are others out there who have been where you

are, someone who will listen and understand exactly what you are going through.

For me, it was this group of wonderful caring people. You have all done more to

get the through that dark patch than you can begin to imagine.

I don't think realizes what wonderful thing she has done for all us with

this group … giving us a safe haven to turn to. Not to mention all valuable

information she provides. So, for – Thank You, Thank You, Thank You!

Kay

[Guest guest]

Thank you Barbara!

I still have a long way to go but I'm getting there. I'm still without

insurance, and had to stop seeing my Rheumatologist because I could no longer

afford her, but I have a great family doctor who sees me at a very low rate. And

for now, the plaquinil and prednisone combo seem to be working and they're

affordable. My medicare will kick in in eleven months so if I can stay out of

the hospital until then I'll be okay.

I just want those new to RA to understand that we all get overwhelmed,

especially in the beginning, I think that is a perfectly normal reaction. It

seems like no one in our lives understand what we're going through. The sad

thing is, unless they've been there themselves, there is no way they can. Having

your life spin totally out of your control leaves you with such a such a lost,

hopeless and helpless feeling.

In all honesty, I'd gone from seeing myself as a burden to my adult children who

had their own lives to live, and hoarding sleeping pills one week, to things

starting to turn around the next. It can and does get better. You just have to

hang in there long enough to give it a chance to improve.

Kay

>

> Hi Kay.

>  

> I am so glad you posted your beautiful letter today.  I am thrilled you are

back writing and life is good for you.  I am sure your letter will impact many

members here.  Life is finally good for you and you so deserve it.

>  

> You continue to do good and feel good.  I am just so happy for you Chris.

>  

> Hugs,

>  

> Barbara

>

>

[Guest guest]

Hi ! Nice to meet you. Yeah, I'm back reading also. I've found the large

print, hard cover books that I can put on a pillow on my lap. I've asked my

children for a Kindle ebook reader for Christmas. Not only because I'm hoping it

will be easier to hold and turn pages, but because Amazon has such a huge

selection of books for lower prices, many are free which fits my tight budget.

If the weather is bad and I don't feel like going out, I can simply download a

book to read.

While this isn't the place to talk writing with RA, please feel free to email me

off group. I'd love to chat with you.

Kay

>

> The voice recognition software is really good, Kay. I use it all the time.

> It takes a while to get used to, and it doesn't seem that great at first,

> but it adjusts to your voice over time and gets more and more accurate. I

> highly recommend it. I use it for my writing and I would never be able to

> write if I didn't have it. So don't lose hope, you will always be able to

> write. As for the books, I have the same problem. I have found that if I

> stick to hardcovers, I can hold them open on the table and only turn the

> pages. That helps. Also, if you have a paperback, you can crack the spine

> and do the same thing. I am always reluctant to do that, because it kind of

> ruins the book, but after all, books are meant to be read!

>

> I'm glad you are keeping up a good attitude. I hope things improve for you,

> and I am always hear as a fellow writer (or attempted writer, I am still a

> beginner) to give you encouragement if you need it!

>

>

>

> Cheapest dragon dictation software on the web on Amazon (I have version 10)

>

>

http://www.amazon.com/s/?ie=UTF8 & keywords=dragon+naturally & tag=googhydr-20 & index\

=aps & hvadid=4341972359 & ref=pd_sl_8xbt882zqk_b

>

> BTW, congratulations on the Disibility. I have it too and its a godsend.

>

[Guest guest]

Hi Katriina.

 

I am glad you sound so much better today.  We all do care about you, and want

you to have your life back.  Things do get better, as we are all dealing with

this ugly beast of a disease RA.

 

Looking back on myself when I got diagnosed with RA, I have come a long way.  I

am sure you will find a way to get your life back on tract. Please let us know

how you are doing.  Take care and rest as much as you can.  That does help.

 

Hugs,

 

Barbara

From: Katriina Alanko <oknala@...>

Subject: [ ] Emotional Issues

Date: Wednesday, December 1, 2010, 10:13 AM

 

Thank you, to everybody who sent such wonderful support. All those notes

with so much caring in them really brighten up my day. I'm actually able to

see the sun at the end of a very long tunnel. With so many different things

causing my pain, it's hard to figure out which pain belongs to which

ailment.

I woke up this morning and thought to myself " Being sick means having a

fever and just feeling cruddy. RA doesn't make me sick. I causes me pain

but I don't consider myself to be sick. I guess I'm in pretty good shape

for the shape I'm in. " People with cancer are ill. People with TB are

ill. I just have pain.

Katriina

[Guest guest]

Speaking of having difficulties in reading books....I have discovered that

e-readers like Kindle are easy to manipulate and hold. I love good long

reads....unfortunately they have become too heavy for me since my favorite

position to read is laying down on the bed on my side. With the Kindle, I just

prop it up sideways and only have to push a button to turn the page. No more

heavy books to hold up and hurt my hands and wrists.

Another advantage is a built in dictionary that allows you to move a cursor

(push with your thumb) in front of the word, press the button and a definition

appears at the bottom of the page you are reading. I love it!

Barbara...your letter was so good. I let my husband read it to get an idea of

how I feel. You put it all into words that are so understandable.....Thank you,

Rojo

in Grass Valley, CA