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> Why am I not allowed to do normal things? Why can't I have

pictures

> up on my walls and stuck to my fridge with magnets without my demon

> child getting ahold of them and destroying them? Why am I not

> allowed a normal child who does not destroy everything she friggin

> touches????? Why can't I have normal children that I can send

> outside to play so they will leave me the hell alone?????

Are you having the same kind of day I am? I have one picture left on

the wall and it's been swinging for a week. The mirror is treatening

to come down on Buster's head. The back yard is off-limits because he

climbs the spa and onto the six foot fence. Ugh.

debbi

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> Why am I not allowed to do normal things? Why can't I have

pictures

> up on my walls and stuck to my fridge with magnets without my demon

> child getting ahold of them and destroying them? Why am I not

> allowed a normal child who does not destroy everything she friggin

> touches????? Why can't I have normal children that I can send

> outside to play so they will leave me the hell alone?????

Are you having the same kind of day I am? I have one picture left on

the wall and it's been swinging for a week. The mirror is treatening

to come down on Buster's head. The back yard is off-limits because he

climbs the spa and onto the six foot fence. Ugh.

debbi

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Guest guest

> Why am I not allowed to do normal things? Why can't I have

pictures

> up on my walls and stuck to my fridge with magnets without my demon

> child getting ahold of them and destroying them? Why am I not

> allowed a normal child who does not destroy everything she friggin

> touches????? Why can't I have normal children that I can send

> outside to play so they will leave me the hell alone?????

Are you having the same kind of day I am? I have one picture left on

the wall and it's been swinging for a week. The mirror is treatening

to come down on Buster's head. The back yard is off-limits because he

climbs the spa and onto the six foot fence. Ugh.

debbi

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  • 2 years later...
Guest guest

--- Marla mbramer@...> wrote:

> Sorry everyone I need to vent!! Sometimes I just

> want to hit my husband

> over the head with a bat!!

> I had a bad night last night, why, because, like

> many of us, to many of us,

> I had a good day yesterday and decided to do some

> cleaning, then got out

> the sewing machine, wiped off the year or so long

> dust from it and made a

> skirt, as I was doing so the left side started to go

> tingly, but of course

> wanted to finish. (mind you that took very little

> time, as I made my wedding

> dress).

> I did take a nap between cleaning and sewing, but

> still went to bed, and did

> the where you're so darn tired you can't sleep, and

> when I feel asleep, I

> would wake up with what I call " jumping legs " .

> OK that set the stage, for this am, on the way home

> from church, hubby

> decides to go get the sail boat out, and I said have

> fun I'm taking a nap, I

> had such a bad night, explained above!!

> and this is what I heard, " Well maybe if you'd get a

> little exercise you

> would feel better, get out and talk a walk, why

> don't you ride your bike!!!

> This time I just looked at him and said, you really

> don't get it do you!!

> then he proceeded with " oh that's just your easy way

> out, telling everyone

> they don't get it, so you can feel sorry for

> yourself!!

> you get the picture, I got it all, from that to

> being lazy, and maybe if you

> did do more, you would be surprised how much better

> you really fell, but you

> just don't want to try that!!

> See he had to deal with a bipolar father, who

> complained of a thousand

> things, and had a thousand excuses for not doing

> anything, ok got a stop as

> the eyes are swelling and blurring the words, those

> darn dry eye, :)

> Thank you for letting me rant... I wish I could say

> it makes me feel better

> but it doesn't, of course we have all been there, I

> know he under a lot of

> stress with looking (not very hard) for a new job

> and all. but that's like

> hitting someone when there down!!

> Lord help me through this day, and Kim through the

> next 4 and 5/7th weeks.

> God Bless,

> Marla

> Hi Marla- sorry you had a bad night and Day-try not

to let it get to u-Just remember that u are doing the

best u can and that sometimes our friends and families

just wont get it. also remember that your illness is

most likly scary for your husband also and when he

makes comments like that it is his way of trying to

bring a normalcy to your life without realizing how

hurtfull the comments are. Take care- Matt

>

> Of NeuroSarcoid66@...

> Sent: Sunday, July 17, 2005 5:55 AM

> To: Neurosarcoidosis

> Subject: Re: seizures Marla

>

>

> Marla

>

> I am glad that you are going to talk with your Dr

> about this, even if you

> do not think it is seizures, best to let him know

> what is going on just to

> be sure.

>

> Take care,

> Kim

> NS Moderator

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

>

>

http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant

> messengers.

>

>

http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

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Guest guest

--- Marla mbramer@...> wrote:

> Sorry everyone I need to vent!! Sometimes I just

> want to hit my husband

> over the head with a bat!!

> I had a bad night last night, why, because, like

> many of us, to many of us,

> I had a good day yesterday and decided to do some

> cleaning, then got out

> the sewing machine, wiped off the year or so long

> dust from it and made a

> skirt, as I was doing so the left side started to go

> tingly, but of course

> wanted to finish. (mind you that took very little

> time, as I made my wedding

> dress).

> I did take a nap between cleaning and sewing, but

> still went to bed, and did

> the where you're so darn tired you can't sleep, and

> when I feel asleep, I

> would wake up with what I call " jumping legs " .

> OK that set the stage, for this am, on the way home

> from church, hubby

> decides to go get the sail boat out, and I said have

> fun I'm taking a nap, I

> had such a bad night, explained above!!

> and this is what I heard, " Well maybe if you'd get a

> little exercise you

> would feel better, get out and talk a walk, why

> don't you ride your bike!!!

> This time I just looked at him and said, you really

> don't get it do you!!

> then he proceeded with " oh that's just your easy way

> out, telling everyone

> they don't get it, so you can feel sorry for

> yourself!!

> you get the picture, I got it all, from that to

> being lazy, and maybe if you

> did do more, you would be surprised how much better

> you really fell, but you

> just don't want to try that!!

> See he had to deal with a bipolar father, who

> complained of a thousand

> things, and had a thousand excuses for not doing

> anything, ok got a stop as

> the eyes are swelling and blurring the words, those

> darn dry eye, :)

> Thank you for letting me rant... I wish I could say

> it makes me feel better

> but it doesn't, of course we have all been there, I

> know he under a lot of

> stress with looking (not very hard) for a new job

> and all. but that's like

> hitting someone when there down!!

> Lord help me through this day, and Kim through the

> next 4 and 5/7th weeks.

> God Bless,

> Marla

> Hi Marla- sorry you had a bad night and Day-try not

to let it get to u-Just remember that u are doing the

best u can and that sometimes our friends and families

just wont get it. also remember that your illness is

most likly scary for your husband also and when he

makes comments like that it is his way of trying to

bring a normalcy to your life without realizing how

hurtfull the comments are. Take care- Matt

>

> Of NeuroSarcoid66@...

> Sent: Sunday, July 17, 2005 5:55 AM

> To: Neurosarcoidosis

> Subject: Re: seizures Marla

>

>

> Marla

>

> I am glad that you are going to talk with your Dr

> about this, even if you

> do not think it is seizures, best to let him know

> what is going on just to

> be sure.

>

> Take care,

> Kim

> NS Moderator

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

>

>

http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant

> messengers.

>

>

http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

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Marla,

It's ok to vent-----that is what we are here for! I understand what you are saying and yes, most of us have gone through this. I got so tired of hearing "if you would exercise, you would feel better"! That is the worst one, I think! And there are others..............I had a lady just the other day ask me "aren't you over that sickness YET?" I just looked at her and then said.........."I will have this the rest of my life and when my lungs get bad enough, I will quit breathing and then I will be over it!" She did not know WHAT to say! Anyway, it is really unfortunate that people do not understand that just because you can walk and talk that you are not really sick! We ALL understand here and you can vent anytime you want to. We are here for you.

Sending love and best wishes........

Darlene

NS Co-Owner/Moderator

RE: venting

Sorry everyone I need to vent!! Sometimes I just want to hit my husband over the head with a bat!!

I had a bad night last night, why, because, like many of us, to many of us, I had a good day yesterday and decided to do some cleaning, then got out the sewing machine, wiped off the year or so long dust from it and made a skirt, as I was doing so the left side started to go tingly, but of course wanted to finish. (

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Marla,

I could be pithy and score this rant as a 7 or 8. For you, though, as rarely as you rant-- I do believe it deserves better--lets say a 9.3.

Honestly though, I don't want to be "pithy" or even score your rant. I want you to know that I do understand. In the perfect, normal world, the suggestions made would work. It's not our world.

I have to say for all of us, holding in the anger and frustration and sadness and grief is hurting ourself even more. We need to rant. It is ok to rant.

I wish I had answers for how to get your point across, I don't.

Even with our faith, sometimes we need to yell. That is ok. We are here for you in those times.

Lovingly,

Tracie

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Matt, thank you, you are always so sweet, thinking of the positive things to say, yes I know a lot of that is true.

but here I am again up in the middle of the nights, as I fall asleep, my jerking legs/body wakes me up, my eyes are so tired I couldn't keep reading, even blurry on the screen now, but waiting for body to settle down.

take care Matt, and thanks for all your positive remarks they are so very helpful.

Marla

Re: seizures Marla> > > Marla> > I am glad that you are going to talk with your Dr> about this, even if you> do not think it is seizures, best to let him know> what is going on just to> be sure.> > Take care,> Kim> NS Moderator> > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- Has been cancelled for now.> > Message Archives:-> >http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant> messengers.> >http://groups.yahoo.com/group/Neurosarcoidosis/database> >

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Thank you Tracie, it's just so nice to know that we can be and feel and say what we want somewhere we can call our safezone, and i think that is what this family here is all about it's our safe zone.

Thanks Tracie.

Marla

-----Original Message-----From: Neurosarcoidosis [mailto:Neurosarcoidosis ]On Behalf Of tiodaat@...Sent: Sunday, July 17, 2005 10:01 PMTo: Neurosarcoidosis Subject: Re: ventingMarla,I could be pithy and score this rant as a 7 or 8. For you, though, as rarely as you rant-- I do believe it deserves better--lets say a 9.3.Honestly though, I don't want to be "pithy" or even score your rant. I want you to know that I do understand. In the perfect, normal world, the suggestions made would work. It's not our world.I have to say for all of us, holding in the anger and frustration and sadness and grief is hurting ourself even more. We need to rant. It is ok to rant. I wish I had answers for how to get your point across, I don't. Even with our faith, sometimes we need to yell. That is ok. We are here for you in those times. Lovingly,Tracie

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Oh Darlene,

you are so right on that one, the being over this yet? like we have the flu or something?

I was talking to a friend today, my daughter went home with them after church to play with her friends, and when I went and got her, I hung out and visited for awhile, she asked how I was doing? and I told her, pretty much what I tell everyone, so true "depends on the day", so she started to ask a few more questions, kind of like yours, but more in the way of, isn't there something that will cure it.

Of course, when you say there is no cure, or even great treatment, because it is so rare, then she wanted to know a little more about it. I explain it as having cancer and MS together with NO cure, in site, due to no funding, no one knows about this disease. then she wanted to know if people die from this disease, most people are shocked to her the answer, Yes! of course asked if she knew of that football player, forgot his name, and she said yes, when I told her he basically died of Sarcoidosis. she looked shocked!

My sister sent me a good article on Sarcoid, with a tiny bit of new news, and talks about exciting things coming out later this year, I will try to scan it in and send it tomorrow, it's interesting.

I asked my husband if he had read it yet, as I had handed it to him the day before, and she said NO I guess I didn't, I reminded him that is how much he cares??

oh well on to bed, hope and pray you all have the best Monday of the week, and since there's only one Monday, better make it good.

love you all,

Marla

-----Original Message-----From: Neurosarcoidosis [mailto:Neurosarcoidosis ]On Behalf Of DarleneSent: Sunday, July 17, 2005 5:58 PMTo: Neurosarcoidosis Subject: Re: venting

Marla,

It's ok to vent-----that is what we are here for! I understand what you are saying and yes, most of us have gone through this. I got so tired of hearing "if you would exercise, you would feel better"! That is the worst one, I think! And there are others..............I had a lady just the other day ask me "aren't you over that sickness YET?" I just looked at her and then said.........."I will have this the rest of my life and when my lungs get bad enough, I will quit breathing and then I will be over it!" She did not know WHAT to say! Anyway, it is really unfortunate that people do not understand that just because you can walk and talk that you are not really sick! We ALL understand here and you can vent anytime you want to. We are here for you.

Sending love and best wishes........

Darlene

NS Co-Owner/Moderator

RE: venting

Sorry everyone I need to vent!! Sometimes I just want to hit my husband over the head with a bat!!

I had a bad night last night, why, because, like many of us, to many of us, I had a good day yesterday and decided to do some cleaning, then got out the sewing machine, wiped off the year or so long dust from it and made a skirt, as I was doing so the left side started to go tingly, but of course wanted to finish. (

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--- Darlene darlene@...> wrote:

> Marla,

> It's ok to vent-----that is what we are here

> for! I understand what you are saying and yes, most

> of us have gone through this. I got so tired of

> hearing " if you would exercise, you would feel

> better " ! That is the worst one, I think! And

> there are others..............I had a lady just the

> other day ask me " aren't you over that sickness

> YET? " I just looked at her and then

> said.......... " I will have this the rest of my life

> and when my lungs get bad enough, I will quit

> breathing and then I will be over it! " She did not

> know WHAT to say! Anyway, it is really unfortunate

> that people do not understand that just because you

> can walk and talk that you are not really sick! We

> ALL understand here and you can vent anytime you

> want to. We are here for you.

>

> Great comeback Darlene- Matt

>

>

>

> RE: venting

>

>

> Sorry everyone I need to vent!! Sometimes I just

> want to hit my husband over the head with a bat!!

> I had a bad night last night, why, because, like

> many of us, to many of us, I had a good day

> yesterday and decided to do some cleaning, then got

> out the sewing machine, wiped off the year or so

> long dust from it and made a skirt, as I was doing

> so the left side started to go tingly, but of course

> wanted to finish. (

____________________________________________________

Start your day with Yahoo! - make it your home page

http://www.yahoo.com/r/hs

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Guest guest

--- Darlene darlene@...> wrote:

> Marla,

> It's ok to vent-----that is what we are here

> for! I understand what you are saying and yes, most

> of us have gone through this. I got so tired of

> hearing " if you would exercise, you would feel

> better " ! That is the worst one, I think! And

> there are others..............I had a lady just the

> other day ask me " aren't you over that sickness

> YET? " I just looked at her and then

> said.......... " I will have this the rest of my life

> and when my lungs get bad enough, I will quit

> breathing and then I will be over it! " She did not

> know WHAT to say! Anyway, it is really unfortunate

> that people do not understand that just because you

> can walk and talk that you are not really sick! We

> ALL understand here and you can vent anytime you

> want to. We are here for you.

>

> Great comeback Darlene- Matt

>

>

>

> RE: venting

>

>

> Sorry everyone I need to vent!! Sometimes I just

> want to hit my husband over the head with a bat!!

> I had a bad night last night, why, because, like

> many of us, to many of us, I had a good day

> yesterday and decided to do some cleaning, then got

> out the sewing machine, wiped off the year or so

> long dust from it and made a skirt, as I was doing

> so the left side started to go tingly, but of course

> wanted to finish. (

____________________________________________________

Start your day with Yahoo! - make it your home page

http://www.yahoo.com/r/hs

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Guest guest

--- Darlene darlene@...> wrote:

> Marla,

> It's ok to vent-----that is what we are here

> for! I understand what you are saying and yes, most

> of us have gone through this. I got so tired of

> hearing " if you would exercise, you would feel

> better " ! That is the worst one, I think! And

> there are others..............I had a lady just the

> other day ask me " aren't you over that sickness

> YET? " I just looked at her and then

> said.......... " I will have this the rest of my life

> and when my lungs get bad enough, I will quit

> breathing and then I will be over it! " She did not

> know WHAT to say! Anyway, it is really unfortunate

> that people do not understand that just because you

> can walk and talk that you are not really sick! We

> ALL understand here and you can vent anytime you

> want to. We are here for you.

>

> Great comeback Darlene- Matt

>

>

>

> RE: venting

>

>

> Sorry everyone I need to vent!! Sometimes I just

> want to hit my husband over the head with a bat!!

> I had a bad night last night, why, because, like

> many of us, to many of us, I had a good day

> yesterday and decided to do some cleaning, then got

> out the sewing machine, wiped off the year or so

> long dust from it and made a skirt, as I was doing

> so the left side started to go tingly, but of course

> wanted to finish. (

__________________________________________________

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Guest guest

--- Darlene darlene@...> wrote:

> Marla,

> It's ok to vent-----that is what we are here

> for! I understand what you are saying and yes, most

> of us have gone through this. I got so tired of

> hearing " if you would exercise, you would feel

> better " ! That is the worst one, I think! And

> there are others..............I had a lady just the

> other day ask me " aren't you over that sickness

> YET? " I just looked at her and then

> said.......... " I will have this the rest of my life

> and when my lungs get bad enough, I will quit

> breathing and then I will be over it! " She did not

> know WHAT to say! Anyway, it is really unfortunate

> that people do not understand that just because you

> can walk and talk that you are not really sick! We

> ALL understand here and you can vent anytime you

> want to. We are here for you.

>

> Great comeback Darlene- Matt

>

>

>

> RE: venting

>

>

> Sorry everyone I need to vent!! Sometimes I just

> want to hit my husband over the head with a bat!!

> I had a bad night last night, why, because, like

> many of us, to many of us, I had a good day

> yesterday and decided to do some cleaning, then got

> out the sewing machine, wiped off the year or so

> long dust from it and made a skirt, as I was doing

> so the left side started to go tingly, but of course

> wanted to finish. (

__________________________________________________

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Guest guest

--- Darlene darlene@...> wrote:

> Marla,

> It's ok to vent-----that is what we are here

> for! I understand what you are saying and yes, most

> of us have gone through this. I got so tired of

> hearing " if you would exercise, you would feel

> better " ! That is the worst one, I think! And

> there are others..............I had a lady just the

> other day ask me " aren't you over that sickness

> YET? " I just looked at her and then

> said.......... " I will have this the rest of my life

> and when my lungs get bad enough, I will quit

> breathing and then I will be over it! " She did not

> know WHAT to say! Anyway, it is really unfortunate

> that people do not understand that just because you

> can walk and talk that you are not really sick! We

> ALL understand here and you can vent anytime you

> want to. We are here for you.

>

> Great comeback Darlene- Matt

>

>

>

> RE: venting

>

>

> Sorry everyone I need to vent!! Sometimes I just

> want to hit my husband over the head with a bat!!

> I had a bad night last night, why, because, like

> many of us, to many of us, I had a good day

> yesterday and decided to do some cleaning, then got

> out the sewing machine, wiped off the year or so

> long dust from it and made a skirt, as I was doing

> so the left side started to go tingly, but of course

> wanted to finish. (

__________________________________________________

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Guest guest

--- Darlene darlene@...> wrote:

> Marla,

> It's ok to vent-----that is what we are here

> for! I understand what you are saying and yes, most

> of us have gone through this. I got so tired of

> hearing " if you would exercise, you would feel

> better " ! That is the worst one, I think! And

> there are others..............I had a lady just the

> other day ask me " aren't you over that sickness

> YET? " I just looked at her and then

> said.......... " I will have this the rest of my life

> and when my lungs get bad enough, I will quit

> breathing and then I will be over it! " She did not

> know WHAT to say! Anyway, it is really unfortunate

> that people do not understand that just because you

> can walk and talk that you are not really sick! We

> ALL understand here and you can vent anytime you

> want to. We are here for you.

>

> Great comeback Darlene- Matt

>

>

>

> RE: venting

>

>

> Sorry everyone I need to vent!! Sometimes I just

> want to hit my husband over the head with a bat!!

> I had a bad night last night, why, because, like

> many of us, to many of us, I had a good day

> yesterday and decided to do some cleaning, then got

> out the sewing machine, wiped off the year or so

> long dust from it and made a skirt, as I was doing

> so the left side started to go tingly, but of course

> wanted to finish. (

__________________________________________________

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Guest guest

--- Darlene darlene@...> wrote:

> Marla,

> It's ok to vent-----that is what we are here

> for! I understand what you are saying and yes, most

> of us have gone through this. I got so tired of

> hearing " if you would exercise, you would feel

> better " ! That is the worst one, I think! And

> there are others..............I had a lady just the

> other day ask me " aren't you over that sickness

> YET? " I just looked at her and then

> said.......... " I will have this the rest of my life

> and when my lungs get bad enough, I will quit

> breathing and then I will be over it! " She did not

> know WHAT to say! Anyway, it is really unfortunate

> that people do not understand that just because you

> can walk and talk that you are not really sick! We

> ALL understand here and you can vent anytime you

> want to. We are here for you.

>

> Great comeback Darlene- Matt

>

>

>

> RE: venting

>

>

> Sorry everyone I need to vent!! Sometimes I just

> want to hit my husband over the head with a bat!!

> I had a bad night last night, why, because, like

> many of us, to many of us, I had a good day

> yesterday and decided to do some cleaning, then got

> out the sewing machine, wiped off the year or so

> long dust from it and made a skirt, as I was doing

> so the left side started to go tingly, but of course

> wanted to finish. (

__________________________________________________

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Thank you Matt.

Are you doing better. I am so behind in reading emails, my day the other day went from bad to worse, my son 16yo got a speeding ticket, 100mph on I-25 going to Denver for a concert with a friend. he says he was going downhill and just wasn't paying attention!!

Stress is what is going to get us, I just have trouble handling the stress.

Thanks so much for the kind words,

God Bless,

Marla

-----Original Message-----From: Neurosarcoidosis [mailto:Neurosarcoidosis ]On Behalf Of CohenSent: Monday, July 18, 2005 10:15 AMTo: Neurosarcoidosis Subject: Re: venting--- Darlene wrote:> Marla,> It's ok to vent-----that is what we are here> for! I understand what you are saying and yes, most> of us have gone through this. I got so tired of> hearing "if you would exercise, you would feel> better"! That is the worst one, I think! And> there are others..............I had a lady just the> other day ask me "aren't you over that sickness> YET?" I just looked at her and then> said.........."I will have this the rest of my life> and when my lungs get bad enough, I will quit> breathing and then I will be over it!" She did not> know WHAT to say! Anyway, it is really unfortunate> that people do not understand that just because you> can walk and talk that you are not really sick! We> ALL understand here and you can vent anytime you> want to. We are here for you.> > Great comeback Darlene- Matt> > > > RE: venting> > > Sorry everyone I need to vent!! Sometimes I just> want to hit my husband over the head with a bat!! > I had a bad night last night, why, because, like> many of us, to many of us, I had a good day> yesterday and decided to do some cleaning, then got> out the sewing machine, wiped off the year or so> long dust from it and made a skirt, as I was doing> so the left side started to go tingly, but of course> wanted to finish. ( ____________________________________________________Start your day with Yahoo! - make it your home page http://www.yahoo.com/r/hs

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