Re: Overly Tuned to the Environment ?

[Guest guest]

Doreen,

I feel you there. i have been on enbrel now for about 2 years and I still have

pain. Some how I manage to get up day after day with all the pain and keep

going to work no matter how much I can't walk across the floor. It makes me

wonder if it is time to throw in the towel and apply for SSDI which is really

hard to get in the state I'm in. You have to apply 3 times in order to get it.

I take pictures of every joint when it is swelled for documentation in hopes

that it will help when I do apply and my foot on my right is even starting to

twist in. My pinkies on both hands have started to twist as well if I hold my

hands straight out they will stay for a moment or two but then it drops into my

palm and I dont have the strength to try to pull it back up.

Pain is what you make of it. You cant let RA take a hold of you. You just have

to keep fighting to keep what you can in your life this is why I keep working

and keep fighting. If you let RA take you instead of you taking it then well

you will end up like a good friend of mine bound to a wheelchair and not able to

move at all, in fact she has to have someone help her wipe when she uses the

bathroom and I don't want that for myself or for anyone else. Remember to keep

moving and don't let yourself get stiff. The stiffening of the joints hurt

worse then the exercise involved to keep them moving.

Living with RA Since 2006

Mom of 2 wonderful children 3 and 5

[ ] Overly Tuned to the Environment ?

I would love to think that my immune system is " overly tuned to the

environment " . That being said, I wish it would pay A LOT LESS

attention, cause I've been hurting beyond hurting for over a week now

(worse than usual) and there's no end in sight!

Overly tuned? I don't think so. Broken? Oh hell no - I'm way beyond

broken. I'm a flippin' train wreck that is still blowing apart!! I've

taken the meds as instructed, I've even taken part in a clinical study

for the past 3 months with the hopes of making things better. NOTHING

is working. I'm ready to toss the whole basket of Rx's and start from

scratch. Fear of more pain is the only thing that is holding me back

from doing this. Most days lately I wonder if I've even been given a

proper diagnosis!

Sorry for the major vent.....Doreen

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[Guest guest]

Doreen,

Sometimes venting is the only relief that we can get.

I have tried to explain to my girls that pain is whey

my moods are not the best at times.

Honey, I hope and pray that your pain will subside soon.

Shirley

>

> I would love to think that my immune system is " overly tuned to the

> environment " . That being said, I wish it would pay A LOT LESS

> attention, cause I've been hurting beyond hurting for over a week

now

> (worse than usual) and there's no end in sight!

>

> Overly tuned? I don't think so. Broken? Oh hell no - I'm way beyond

> broken. I'm a flippin' train wreck that is still blowing apart!!

I've

> taken the meds as instructed, I've even taken part in a clinical

study

> for the past 3 months with the hopes of making things better.

NOTHING

> is working. I'm ready to toss the whole basket of Rx's and start

from

> scratch. Fear of more pain is the only thing that is holding me

back

> from doing this. Most days lately I wonder if I've even been given

a

> proper diagnosis!

>

> Sorry for the major vent.....Doreen

>

[Guest guest]

Doreen and all,

Please don't take my arguably optimistic approach to how I see our

immune system as a play-down. I'm in the same boat as you. I fear

the pain. It is horrible to get up from a sleepless night, walk on

feet that feel crunched and on fire, listen to my hips, legs and

every other joint pop and crack as I try not to fall down the stairs,

struggling to open those damned lids on my pill bottles. I am a

young guy with a young family who are relying on me to do things I'm

not sure I can do for much longer and that REALLY cuts a deep slice

across my spirit. I cannot afford to be one of the 60% who go on

disability after 10 years. I cannot. Being in this position affords

me only one way to look at things - optimistically. Because really,

what else is there? I'm not going to feel sorry for myself or let

this f$%king disease take me. I've got enough piss and wind left to

fight this thing in every way I can. I'm not going to say that

ANYTHING in my body is broken, because it is not, yet.

But that is my position at this moment. I know we're all at many

different levels here, and perhaps I haven't even felt what pain is

or can be with this. For that insensitivity, I am truly sorry. At

this point, I just have no other option than to be optimistic because

I will not travel any other road.

Brad

> >

> > I would love to think that my immune system is " overly tuned to

the

> > environment " . That being said, I wish it would pay A LOT LESS

> > attention, cause I've been hurting beyond hurting for over a week

> now

> > (worse than usual) and there's no end in sight!

> >

> > Overly tuned? I don't think so. Broken? Oh hell no - I'm way

beyond

> > broken. I'm a flippin' train wreck that is still blowing apart!!

> I've

> > taken the meds as instructed, I've even taken part in a clinical

> study

> > for the past 3 months with the hopes of making things better.

> NOTHING

> > is working. I'm ready to toss the whole basket of Rx's and start

> from

> > scratch. Fear of more pain is the only thing that is holding me

> back

> > from doing this. Most days lately I wonder if I've even been

given

> a

> > proper diagnosis!

> >

> > Sorry for the major vent.....Doreen

> >

>

[Guest guest]

I like your road Brad.  What sort of dietary modifications have you tried and

what have you found?

 

Thanks,

 

[ ] Re: Overly Tuned to the Environment ?

Doreen and all,

Please don't take my arguably optimistic approach to how I see our

immune system as a play-down. I'm in the same boat as you. I fear

the pain. It is horrible to get up from a sleepless night, walk on

feet that feel crunched and on fire, listen to my hips, legs and

every other joint pop and crack as I try not to fall down the stairs,

struggling to open those damned lids on my pill bottles. I am a

young guy with a young family who are relying on me to do things I'm

not sure I can do for much longer and that REALLY cuts a deep slice

across my spirit. I cannot afford to be one of the 60% who go on

disability after 10 years. I cannot. Being in this position affords

me only one way to look at things - optimistically. Because really,

what else is there? I'm not going to feel sorry for myself or let

this f$%king disease take me. I've got enough piss and wind left to

fight this thing in every way I can. I'm not going to say that

ANYTHING in my body is broken, because it is not, yet.

But that is my position at this moment. I know we're all at many

different levels here, and perhaps I haven't even felt what pain is

or can be with this. For that insensitivity, I am truly sorry. At

this point, I just have no other option than to be optimistic because

I will not travel any other road.

Brad

> >

> > I would love to think that my immune system is " overly tuned to

the

> > environment " . That being said, I wish it would pay A LOT LESS

> > attention, cause I've been hurting beyond hurting for over a week

> now

> > (worse than usual) and there's no end in sight!

> >

> > Overly tuned? I don't think so. Broken? Oh hell no - I'm way

beyond

> > broken. I'm a flippin' train wreck that is still blowing apart!!

> I've

> > taken the meds as instructed, I've even taken part in a clinical

> study

> > for the past 3 months with the hopes of making things better.

> NOTHING

> > is working. I'm ready to toss the whole basket of Rx's and start

> from

> > scratch. Fear of more pain is the only thing that is holding me

> back

> > from doing this. Most days lately I wonder if I've even been

given

> a

> > proper diagnosis!

> >

> > Sorry for the major vent.....Doreen

> >

>

[Guest guest]

Brad,

Since I was dx'd with RA I have been more in tune to others with it.

In my job I have met several people with severe damage and they are

still working. I have a cousin that despite everything he continued

to work until he was ready to retire. I only personally know of one

person that was forced to retire because of RA.

I hope and pray that you will also find the strength and will to

continue for the years you need to work.

Our mind plays a great role in what happens. Keep your mind strong

and healthy. Everyone is not a statistic and remission is always a

possibility.

Shirley

>

> Doreen and all,

>

> Please don't take my arguably optimistic approach to how I see our

> immune system as a play-down. I'm in the same boat as you. I

fear

> the pain. It is horrible to get up from a sleepless night, walk

on

> feet that feel crunched and on fire, listen to my hips, legs and

> every other joint pop and crack as I try not to fall down the

stairs,

> struggling to open those damned lids on my pill bottles. I am a

> young guy with a young family who are relying on me to do things

I'm

> not sure I can do for much longer and that REALLY cuts a deep

slice

> across my spirit. I cannot afford to be one of the 60% who go on

> disability after 10 years. I cannot. Being in this position

affords

> me only one way to look at things - optimistically. Because

really,

> what else is there? I'm not going to feel sorry for myself or let

> this f$%king disease take me. I've got enough piss and wind left

to

> fight this thing in every way I can. I'm not going to say that

> ANYTHING in my body is broken, because it is not, yet.

> But that is my position at this moment. I know we're all at many

> different levels here, and perhaps I haven't even felt what pain

is

> or can be with this. For that insensitivity, I am truly sorry.

At

> this point, I just have no other option than to be optimistic

because

> I will not travel any other road.

>

> Brad

[Guest guest]

brad , i just read your post. it's AWESOME u have an OPTIMISTIC outlook but

unlike others in this group some have had ra for a VERY long time. i don't know

how long u have had it but have some COMPASSION PLEASE for other peoples stories

& STRUGGLES in their daily lives of living w/ this UGLY

DISEASE!!!!!!!!!!!!!!!!!! god bless,melynda gamez 9/21/08 7:45p.m.cdt

[ ] Re: Overly Tuned to the Environment ?

Doreen and all,

Please don't take my arguably optimistic approach to how I see our

immune system as a play-down.  I'm in the same boat as you.  I fear

the pain.  It is horrible to get up from a sleepless night, walk on

feet that feel crunched and on fire, listen to my hips, legs and

every other joint pop and crack as I try not to fall down the stairs,

struggling to open those damned lids on my pill bottles.  I am a

young guy with a young family who are relying on me to do things I'm

not sure I can do for much longer and that REALLY cuts a deep slice

across my spirit.  I cannot afford to be one of the 60% who go on

disability after 10 years.  I cannot.  Being in this position affords

me only one way to look at things - optimistically.  Because really,

what else is there?  I'm not going to feel sorry for myself or let

this f$%king disease take me.  I've got enough piss and wind left to

fight this thing in every way I can.  I'm not going to say that

ANYTHING in my body is broken, because it is not, yet. 

But that is my position at this moment.  I know we're all at many

different levels here, and perhaps I haven't even felt what pain is

or can be with this.  For that insensitivity, I am truly sorry.  At

this point, I just have no other option than to be optimistic because

I will not travel any other road.

Brad

> >

> > I would love to think that my immune system is " overly tuned to

the

> > environment " . That being said, I wish it would pay A LOT LESS

> > attention, cause I've been hurting beyond hurting for over a week

> now

> > (worse than usual) and there's no end in sight!

> >

> > Overly tuned? I don't think so. Broken? Oh hell no - I'm way

beyond

> > broken. I'm a flippin' train wreck that is still blowing apart!!

> I've

> > taken the meds as instructed, I've even taken part in a clinical

> study

> > for the past 3 months with the hopes of making things better.

> NOTHING

> > is working. I'm ready to toss the whole basket of Rx's and start

> from

> > scratch. Fear of more pain is the only thing that is holding me

> back

> > from doing this. Most days lately I wonder if I've even been

given

> a

> > proper diagnosis!

> >

> > Sorry for the major vent.....Doreen

> >

>

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

[Guest guest]

Hi Brad - Its ok. No big deal. I didn't take your approach as a

play-down at all - nor did I think you were being insensitive. I have

been having a flare for almost a week now and my reply was just

expressing the way I have been feeling. We each handle our pain

differently and our pain levels are all different on a daily basis as

well. Please accept my apologies if I sounded aggressive in my reply.

I know what you mean about not wanting this disease to take us. Its

wonderful that you are continuing to fight it. BUT - this is the crux,

here - you need to find the right combination of medications that will

help you to slow the progress of this disease and allow you to

continue to function in the way you desire. You've been fighting the

good fight for a while by the sound of things, doing it all your own

way. Its not admitting defeat or even being defeated if you have to

allow some assistance to keep the monster at bay. Keep us posted.

You've got a whole lot of people here who are going through the same

thing. You're not alone..........Doreen

--- In , " Brad Berg " <blueworld_of_fire@...>

wrote:

>

> Doreen and all,

>

> Please don't take my arguably optimistic approach to how I see our

> immune system as a play-down. I'm in the same boat as you. I fear

> the pain. It is horrible to get up from a sleepless night, walk on

> feet that feel crunched and on fire, listen to my hips, legs and

> every other joint pop and crack as I try not to fall down the

> stairs, struggling to open those damned lids on my pill bottles. I

> am a young guy with a young family who are relying on me to do

> things I'm not sure I can do for much longer and that REALLY cuts a

> deep slice across my spirit. I cannot afford to be one of the 60%

> who go on disability after 10 years. I cannot. Being in this

> position affords me only one way to look at things -

> optimistically. Because really, what else is there? I'm not going

> to feel sorry for myself or let this f$%king disease take me. I've

> got enough piss and wind left to fight this thing in every way I

> can. I'm not going to say that ANYTHING in my body is broken,

> because it is not, yet.

> But that is my position at this moment. I know we're all at many

> different levels here, and perhaps I haven't even felt what pain is

> or can be with this. For that insensitivity, I am truly sorry. At

> this point, I just have no other option than to be optimistic

> because I will not travel any other road.

>

> Brad

>

[Guest guest]

I try to keep to as organic and vegetarian a diet as possible and

right now, I'm about an 85% vegetarian with about 90% of my veggies

as organic. I do slip in some fish or chicken now and then. I stay

away from tomatoes, potatoes, and anything that concentrates or is

derived from them because I've found that I flare within hours of

eating them. One thing I think that has saved me so far is

movement. I move around ALOT in my job and do a lot of physical

activities after work (walking, playing with my daughter, and yes,

dancing with headphones). I'm always doing joint stretches through

the day, almost unconsciously now. Doing all this allows me on

occasion to go to bed without any pain meds, though it is a risk. I

usually wake up around 4am really hurting. But I do some strange

stuff too that for however strange seems to help. Every morning, I

stand on my head for about 3 minutes. It seems to loosen things up

and the pain and morning stiffness seems to abate a bit. Also at

night right before bed, I heat up a big cup of milk and add a couple

of big squirts of honey. You just can't go wrong with honey. If

nothing else, it really helps me sleep a full night.

This course, obviously, isn't for everyone. Like I said, I'm a

newbie to RA, about 10 months into it, so I am trying almost anything

that sounds like a good deal -- other than DMARDs. I just don't want

to touch those unless its a last resort.

Brad

> > >

> > > I would love to think that my immune system is " overly tuned to

> the

> > > environment " . That being said, I wish it would pay A LOT LESS

> > > attention, cause I've been hurting beyond hurting for over a

week

> > now

> > > (worse than usual) and there's no end in sight!

> > >

> > > Overly tuned? I don't think so. Broken? Oh hell no - I'm way

> beyond

> > > broken. I'm a flippin' train wreck that is still blowing

apart!!

> > I've

> > > taken the meds as instructed, I've even taken part in a

clinical

> > study

> > > for the past 3 months with the hopes of making things better.

> > NOTHING

> > > is working. I'm ready to toss the whole basket of Rx's and

start

> > from

> > > scratch. Fear of more pain is the only thing that is holding me

> > back

> > > from doing this. Most days lately I wonder if I've even been

> given

> > a

> > > proper diagnosis!

> > >

> > > Sorry for the major vent.....Doreen

> > >

> >

>

>

>

>

>

>

>