Re: How Do You Keep Positive?

[Guest guest]

I am right there with you sister... this sucks.. iam new to this too..also lost

my job... I have days where I am coping and then days where i really hit the

wall with the realization of it all. Like you I am having problems dealing with

the reality of this.

-------------- Original message --------------

I struggled with posting this.

I typed this out several times over the past couple of days, but just

couldn't get myself to hit the " send " button.

There are MANY people here who are happy, optimistic and seem very

well adjusted about what they are dealing with. I am newly diagnosed,

and still haven't found the right med combo yet, so suffer daily with

accute pain and limited mobility. There are still many days that I spend

22/24 hours in bed sleeping or unable to move.

I could list all the negatives, like how I've lost my job (and only source

of income) of ten years, and how I struggle to pay for my meds

monthly. But I know that there are so many others out there who are in

a much worse situation than myself.

I guess it's because I am still new to all of this. Maybe I am still in the

mourning period where I long for the way my life used to be? I am not

normally a negative person. I am a realist, but overall....normally very

positive. I hate this feeling of helplessness over this damn disease. I

know that I will find the right med combo and it will make all the

difference, but until then....I am playing the waiting game.

Not feeling sorry for myself.....just feeling helpless.

Thanks for reading...

[Guest guest]

I am right there with you sister... this sucks.. iam new to this too..also lost

my job... I have days where I am coping and then days where i really hit the

wall with the realization of it all. Like you I am having problems dealing with

the reality of this.

-------------- Original message --------------

I struggled with posting this.

I typed this out several times over the past couple of days, but just

couldn't get myself to hit the " send " button.

There are MANY people here who are happy, optimistic and seem very

well adjusted about what they are dealing with. I am newly diagnosed,

and still haven't found the right med combo yet, so suffer daily with

accute pain and limited mobility. There are still many days that I spend

22/24 hours in bed sleeping or unable to move.

I could list all the negatives, like how I've lost my job (and only source

of income) of ten years, and how I struggle to pay for my meds

monthly. But I know that there are so many others out there who are in

a much worse situation than myself.

I guess it's because I am still new to all of this. Maybe I am still in the

mourning period where I long for the way my life used to be? I am not

normally a negative person. I am a realist, but overall....normally very

positive. I hate this feeling of helplessness over this damn disease. I

know that I will find the right med combo and it will make all the

difference, but until then....I am playing the waiting game.

Not feeling sorry for myself.....just feeling helpless.

Thanks for reading...

[Guest guest]

HI ,

Don't feel bad about not being able to be positive all the time. I

am relatively new at this diagnosed just six months ago and I have

yet to reach that remission stage or decrease in flare stage,

whatever you want to call it. I struggle often to stay positive.

It is a daily struggle. I read this message board and it helps me a

lot. There are days when I cannot go anywhere, lots of days, but I

don't want to whine so I don't mention how much pain I am in or how

much this walking cast has really slowed me down even more.

Financially, it was liking being hit by a tornado for our family so

I understand your dilemma. Friends and family have been helpful and

I have had to learn to accept help even if it is just driving the

kids to a function or something, which was hard for me because I was

always the one who did those things. People do often want to help

and if they are " sniffing around " as my life coach says, then by all

means don't be afraid to ask for a little help to ease your burden.

I also get lots of samples from my doctors offices of medications.

I call and beg and tell them flat out I cannot afford it. They have

been awesome to me on this level with some of my very expensive meds

like Nexium especially. I cry myself to sleep sometimes, do you? I

try to do it when no one is around so they don't know how bad I feel

because I have already hurt my family so much with this terrible

burden that I have placed on them. I know they love me and are very

angry at the disease, but so am I, so am I. I miss my old life and

my old self, but I am learning to accept that my life is not going

to be that way again. I am on a new journey and who knows where it

may lead me? Please, email me anytime, anytime at

tracierae@.... I do not mind a bit and it is more

personal. Just try to hang in there and take one day at a time, one

hour at a time if necessary. This group has saved my life

literally. I don't think I could have made it without their support

and love. They all understand the pain you are going through.

They are very good about not whining a lot, but that does not mean

that they are not in pain too and just putting on a good front for

us. LOL If it were not for this group I would have little contact

with the outside world other than through my kids and children.

Thank GOD for technology. Well, I rambled long enough and I hope I

have been helpful in some way. Please email me. I would love to

hear from you and I will worry about you now anyway, so please email

me. Sending you BIG gentle hugs from Tracie in Maine!

> I struggled with posting this.

>

> I typed this out several times over the past couple of days, but

just

> couldn't get myself to hit the " send " button.

>

> There are MANY people here who are happy, optimistic and seem very

> well adjusted about what they are dealing with. I am newly

diagnosed,

> and still haven't found the right med combo yet, so suffer daily

with

> accute pain and limited mobility. There are still many days that

I spend

> 22/24 hours in bed sleeping or unable to move.

>

> I could list all the negatives, like how I've lost my job (and

only source

> of income) of ten years, and how I struggle to pay for my meds

> monthly. But I know that there are so many others out there who

are in

> a much worse situation than myself.

>

> I guess it's because I am still new to all of this. Maybe I am

still in the

> mourning period where I long for the way my life used to be? I am

not

> normally a negative person. I am a realist, but

overall....normally very

> positive. I hate this feeling of helplessness over this damn

disease. I

> know that I will find the right med combo and it will make all the

> difference, but until then....I am playing the waiting game.

>

> Not feeling sorry for myself.....just feeling helpless.

>

> Thanks for reading...

>

>

[Guest guest]

HI ,

Don't feel bad about not being able to be positive all the time. I

am relatively new at this diagnosed just six months ago and I have

yet to reach that remission stage or decrease in flare stage,

whatever you want to call it. I struggle often to stay positive.

It is a daily struggle. I read this message board and it helps me a

lot. There are days when I cannot go anywhere, lots of days, but I

don't want to whine so I don't mention how much pain I am in or how

much this walking cast has really slowed me down even more.

Financially, it was liking being hit by a tornado for our family so

I understand your dilemma. Friends and family have been helpful and

I have had to learn to accept help even if it is just driving the

kids to a function or something, which was hard for me because I was

always the one who did those things. People do often want to help

and if they are " sniffing around " as my life coach says, then by all

means don't be afraid to ask for a little help to ease your burden.

I also get lots of samples from my doctors offices of medications.

I call and beg and tell them flat out I cannot afford it. They have

been awesome to me on this level with some of my very expensive meds

like Nexium especially. I cry myself to sleep sometimes, do you? I

try to do it when no one is around so they don't know how bad I feel

because I have already hurt my family so much with this terrible

burden that I have placed on them. I know they love me and are very

angry at the disease, but so am I, so am I. I miss my old life and

my old self, but I am learning to accept that my life is not going

to be that way again. I am on a new journey and who knows where it

may lead me? Please, email me anytime, anytime at

tracierae@.... I do not mind a bit and it is more

personal. Just try to hang in there and take one day at a time, one

hour at a time if necessary. This group has saved my life

literally. I don't think I could have made it without their support

and love. They all understand the pain you are going through.

They are very good about not whining a lot, but that does not mean

that they are not in pain too and just putting on a good front for

us. LOL If it were not for this group I would have little contact

with the outside world other than through my kids and children.

Thank GOD for technology. Well, I rambled long enough and I hope I

have been helpful in some way. Please email me. I would love to

hear from you and I will worry about you now anyway, so please email

me. Sending you BIG gentle hugs from Tracie in Maine!

> I struggled with posting this.

>

> I typed this out several times over the past couple of days, but

just

> couldn't get myself to hit the " send " button.

>

> There are MANY people here who are happy, optimistic and seem very

> well adjusted about what they are dealing with. I am newly

diagnosed,

> and still haven't found the right med combo yet, so suffer daily

with

> accute pain and limited mobility. There are still many days that

I spend

> 22/24 hours in bed sleeping or unable to move.

>

> I could list all the negatives, like how I've lost my job (and

only source

> of income) of ten years, and how I struggle to pay for my meds

> monthly. But I know that there are so many others out there who

are in

> a much worse situation than myself.

>

> I guess it's because I am still new to all of this. Maybe I am

still in the

> mourning period where I long for the way my life used to be? I am

not

> normally a negative person. I am a realist, but

overall....normally very

> positive. I hate this feeling of helplessness over this damn

disease. I

> know that I will find the right med combo and it will make all the

> difference, but until then....I am playing the waiting game.

>

> Not feeling sorry for myself.....just feeling helpless.

>

> Thanks for reading...

>

>

[Guest guest]

,

We have all been where you are at right now. We all know your pain. I for one

know what it is like to loose your Job and Ins. Somehow you have to find it in

yourself to keep positive, Nobody can do it for you. You will be in my Prayers.

Trudy

ltlmisscrankypants <ltlmisscrankypants@...> wrote:

I struggled with posting this.

I typed this out several times over the past couple of days, but just

couldn't get myself to hit the " send " button.

There are MANY people here who are happy, optimistic and seem very

well adjusted about what they are dealing with. I am newly diagnosed,

and still haven't found the right med combo yet, so suffer daily with

accute pain and limited mobility. There are still many days that I spend

22/24 hours in bed sleeping or unable to move.

I could list all the negatives, like how I've lost my job (and only source

of income) of ten years, and how I struggle to pay for my meds

monthly. But I know that there are so many others out there who are in

a much worse situation than myself.

I guess it's because I am still new to all of this. Maybe I am still in the

mourning period where I long for the way my life used to be? I am not

normally a negative person. I am a realist, but overall....normally very

positive. I hate this feeling of helplessness over this damn disease. I

know that I will find the right med combo and it will make all the

difference, but until then....I am playing the waiting game.

Not feeling sorry for myself.....just feeling helpless.

Thanks for reading...

[Guest guest]

,

We have all been where you are at right now. We all know your pain. I for one

know what it is like to loose your Job and Ins. Somehow you have to find it in

yourself to keep positive, Nobody can do it for you. You will be in my Prayers.

Trudy

ltlmisscrankypants <ltlmisscrankypants@...> wrote:

I struggled with posting this.

I typed this out several times over the past couple of days, but just

couldn't get myself to hit the " send " button.

There are MANY people here who are happy, optimistic and seem very

well adjusted about what they are dealing with. I am newly diagnosed,

and still haven't found the right med combo yet, so suffer daily with

accute pain and limited mobility. There are still many days that I spend

22/24 hours in bed sleeping or unable to move.

I could list all the negatives, like how I've lost my job (and only source

of income) of ten years, and how I struggle to pay for my meds

monthly. But I know that there are so many others out there who are in

a much worse situation than myself.

I guess it's because I am still new to all of this. Maybe I am still in the

mourning period where I long for the way my life used to be? I am not

normally a negative person. I am a realist, but overall....normally very

positive. I hate this feeling of helplessness over this damn disease. I

know that I will find the right med combo and it will make all the

difference, but until then....I am playing the waiting game.

Not feeling sorry for myself.....just feeling helpless.

Thanks for reading...

[Guest guest]

-

First a big hug.

I have up days and down days. Some painful days I get angry, some

painful days I get sad, or mourn. I even do that on a good day,

sometimes. I was dx'ed 3 years ago and I still have days when I 2nd

guess the whole thing, wonder if I really have this illness, wonder

if it is in my imagination or some weird thing. Then on some good

days I think WOW this is great and I am gonna hold on to this.

Surprising, on some real bad days, I am able to tell myself tomorrow

might be better. I think it all kinda goes with the illness.

-- In , " ltlmisscrankypants "

<ltlmisscrankypants@h...> wrote:

> I struggled with posting this.

>

> I typed this out several times over the past couple of days, but

just

> couldn't get myself to hit the " send " button.

>

> There are MANY people here who are happy, optimistic and seem very

> well adjusted about what they are dealing with. I am newly

diagnosed,

> and still haven't found the right med combo yet, so suffer daily

with

> accute pain and limited mobility. There are still many days that I

spend

> 22/24 hours in bed sleeping or unable to move.

>

> I could list all the negatives, like how I've lost my job (and only

source

> of income) of ten years, and how I struggle to pay for my meds

> monthly. But I know that there are so many others out there who

are in

> a much worse situation than myself.

>

> I guess it's because I am still new to all of this. Maybe I am

still in the

> mourning period where I long for the way my life used to be? I am

not

> normally a negative person. I am a realist, but

overall....normally very

> positive. I hate this feeling of helplessness over this damn

disease. I

> know that I will find the right med combo and it will make all the

> difference, but until then....I am playing the waiting game.

>

> Not feeling sorry for myself.....just feeling helpless.

>

> Thanks for reading...

>

>

[Guest guest]

-

First a big hug.

I have up days and down days. Some painful days I get angry, some

painful days I get sad, or mourn. I even do that on a good day,

sometimes. I was dx'ed 3 years ago and I still have days when I 2nd

guess the whole thing, wonder if I really have this illness, wonder

if it is in my imagination or some weird thing. Then on some good

days I think WOW this is great and I am gonna hold on to this.

Surprising, on some real bad days, I am able to tell myself tomorrow

might be better. I think it all kinda goes with the illness.

-- In , " ltlmisscrankypants "

<ltlmisscrankypants@h...> wrote:

> I struggled with posting this.

>

> I typed this out several times over the past couple of days, but

just

> couldn't get myself to hit the " send " button.

>

> There are MANY people here who are happy, optimistic and seem very

> well adjusted about what they are dealing with. I am newly

diagnosed,

> and still haven't found the right med combo yet, so suffer daily

with

> accute pain and limited mobility. There are still many days that I

spend

> 22/24 hours in bed sleeping or unable to move.

>

> I could list all the negatives, like how I've lost my job (and only

source

> of income) of ten years, and how I struggle to pay for my meds

> monthly. But I know that there are so many others out there who

are in

> a much worse situation than myself.

>

> I guess it's because I am still new to all of this. Maybe I am

still in the

> mourning period where I long for the way my life used to be? I am

not

> normally a negative person. I am a realist, but

overall....normally very

> positive. I hate this feeling of helplessness over this damn

disease. I

> know that I will find the right med combo and it will make all the

> difference, but until then....I am playing the waiting game.

>

> Not feeling sorry for myself.....just feeling helpless.

>

> Thanks for reading...

>

>

[Guest guest]

,

If a dear friend or relative died, you would allow yourself time to

mourn them, wouldn't you? That's perfectly normal, and actually a

good thing to do, to cry and get angry, then accept it.

In my disease (Dercum's) I have gone through all the stages. I am at

the point now that I say " OK, I've got this, there's no cure and very

little treatment at this stage (it's a rare disease.) " Do I let it

rule me, or do I rearrange my life around it? So I am learning new

things, investigating new things, doing new things. Taking time to

look around and see possibilities that I wouldn't have considered

before becoming ill.

Your RA is apparently not under control yet, but from what I've read

and learned here, it will be at some point, hopefully soon! You

sound like you do have a good attitude, and that will carry you

through. As you say, you are playing the waiting game, so look at

this time as sort of a weird vacation, and find ways of occupying the

time until your relief arrives.

You're in my prayers,

Judi

[Guest guest]

,

If a dear friend or relative died, you would allow yourself time to

mourn them, wouldn't you? That's perfectly normal, and actually a

good thing to do, to cry and get angry, then accept it.

In my disease (Dercum's) I have gone through all the stages. I am at

the point now that I say " OK, I've got this, there's no cure and very

little treatment at this stage (it's a rare disease.) " Do I let it

rule me, or do I rearrange my life around it? So I am learning new

things, investigating new things, doing new things. Taking time to

look around and see possibilities that I wouldn't have considered

before becoming ill.

Your RA is apparently not under control yet, but from what I've read

and learned here, it will be at some point, hopefully soon! You

sound like you do have a good attitude, and that will carry you

through. As you say, you are playing the waiting game, so look at

this time as sort of a weird vacation, and find ways of occupying the

time until your relief arrives.

You're in my prayers,

Judi

[Guest guest]

Speaking from experience, , I can tell you that it was hard for me

to be positive before and just after diagnosis when I was in constant

pain. Not being able to open a bottle or jar, squeeze out a dish cloth,

or cut my own meat was very depressing.

After the meds started helping the pain and inflammation, I could

manage to be more positive. Since I've been on Enbrel, my mood has

changed a great deal for the better.

It does take a while to find the right med combo for your particular

situation. Just keep bugging your rheumy until he hits the jackpot. I

hope it won't be too long.

Sue

On Thursday, May 12, 2005, at 02:10 AM, ltlmisscrankypants wrote:

> I guess it's because I am still new to all of this. Maybe I am still

> in the

> mourning period where I long for the way my life used to be? I am not

> normally a negative person. I am a realist, but overall....normally

> very

> positive. I hate this feeling of helplessness over this damn disease.

> I

> know that I will find the right med combo and it will make all the

> difference, but until then....I am playing the waiting game.

[Guest guest]

Speaking from experience, , I can tell you that it was hard for me

to be positive before and just after diagnosis when I was in constant

pain. Not being able to open a bottle or jar, squeeze out a dish cloth,

or cut my own meat was very depressing.

After the meds started helping the pain and inflammation, I could

manage to be more positive. Since I've been on Enbrel, my mood has

changed a great deal for the better.

It does take a while to find the right med combo for your particular

situation. Just keep bugging your rheumy until he hits the jackpot. I

hope it won't be too long.

Sue

On Thursday, May 12, 2005, at 02:10 AM, ltlmisscrankypants wrote:

> I guess it's because I am still new to all of this. Maybe I am still

> in the

> mourning period where I long for the way my life used to be? I am not

> normally a negative person. I am a realist, but overall....normally

> very

> positive. I hate this feeling of helplessness over this damn disease.

> I

> know that I will find the right med combo and it will make all the

> difference, but until then....I am playing the waiting game.