RE: we need you Tracie

[Guest guest]

Dearest

Tracie,

I can so

feel what you are going through and it’s not a pretty place, and it is

hard to deal with, however “One day at a time” really that helps

me, (most of the time). Think about your husband when the boys do move

on, he will be there more for you, like you said you are going to miss all this

when there gone, very true! I know that feeling of letting yourself pass

away, I have been in that place (mentally and emotionally) where I think it’s

OK now if I just don’t come back and I can just keep on going (as to

heaven).

Being away

with your husband and having his attention, and just being on the schedule was

such a nice treat, and wow wouldn’t it be nice if it was like this

forever, I think that’s why they call it a vacation, we vacate away from

every day life.

And now

back in reality is just that Reality. Just think what would happen if you

did just pass on, then the boys move out and your husband is now alone. I

am sorry my friend that you are going through all this, I think sometimes the

medication does make us crazy, not the side effects, the “do I really

need to take all this medication, I’m sick of taking it and wish I could

just stop”, I get those feeling too, I’m sure we all do. Do

you have someone to talk to, I just decided to go to a friend who is also a

counselor, to see her as a counselor, I went yesterday, and it felt good to

just “talk”, and then have her tell me that all my feelings are

valid, and how to approach those around me with how I feel.

And then

of course there all of us here to love and support you, and we need that job,

and we need youJ. Love you, Marl a

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Friday, January 18, 2008

11:48 PM

To: Neurosarcoidosis

Subject:

talking to family

This is obviously a

major challenge for me, the issue of explaining to the family what is going on

so that they can choose to be part of my healing team- or not. Last week

my husband and I spent a wonderful week at the coast. For the first time

in months, I got up at the same time he did, and I went to sleep at the same

time he did. My " normal " pattern

has been to stay up a couple of hours after he's gone to bed so that I can turn

my brain off so that I can sleep.

Since we've been home,

every night is - as usual- a time for Dave and our son to do their

workouts. We have a full Nautilus weight system, a treadmill and exercise

bike. My son's best friend, a wonderful kid that has been a part of our

life and family for the last 15 yrs, also comes over to work out.

The challenge is that

likes to have dinner, then work out. The boys want to work out,

then eat. And no one starts at the same time-- it's a 3 to 4 hour

process. Someone will be on the weights, someone on the treadmill or

bike, and lots--LOTS of testosterone.

My son also purchased

a new Play station with an electric guitar, and part of the " fun " is

to hook it up to the tv in the living room-- and while waiting for the

equipment to come available they all try to learn to play the guitar.

The other component is

that the exercise equipment is in the laundry room, which serves as my office

also--so my computer is in there-- and unaccessible while they work out.

So-- I am run out of

my living room, my office, and end up in my bedroom. Because of the neuropathy, reading a book lying down is hell on the

hands and arms.

Now-- and I had

a talk tonight over dinner-- and he asked what was up-- while gone, I could

operate on the same schedule he's on. So I explained that with all the

energy, the noise of weights being lifted and slammed back down on the bars,

the guitar, the challenges of who's going to lift more, or do more crunches on

the exercise ball (which is also in the living room, since the laundry room is

not that big) and the raw energy of 24 yo boys, and one man that wants to be in

full energy match with them-- I'm finding that I go into sensation

overload.

It makes it so that I

let them go to bed, and I sit here and play Scrabble or Mahjong or read-- in

the quiet of the night.

Hubby stated that he

would ask " what can we do to help " but that " he wasn't going to

change what he's doing, or ask the boys to change so what good is it to discuss

this... "

I gotta tell ya, I'm

on overload. I've had a nasty sinus infection this last week, I've had to

have an echocardiogram, and an ekg, and last week was Remicade, tonight is

Methotrexate, and I'm a basketcase.

Why is it that he

can't understand that even if they all worked out starting at the same time--

and just a hour or two was spent in that energy- (I did mention this) that it

would help me cope with all the energy they bring in.

I also explained that

I totally understand that both boys will be leaving home for their careers in

just a couple of months time- and that I understand how important this time is

for him, as well as for me. I love the guys exuberance. I wish I

had a small amount of it. I know that my heart is really going to miss it

when they are gone. I know is going to be very lonely-- not only is

his son moving on-- but once again, the reality of what his wife can't do is

going to be in our faces-- again.

This morning I

honestly felt like and thought- consciously thought, if I could let myself pass

away- it'd be ok.

I know it's the meds-

and part of my experience lately has been waking up to the thought of screaming

out loud-- feeling like my body has been invaded by who knows what. It is

so very scary-- it's like a full blown panic attack- while I'm asleep. Is

it what the sarc is doing to my brain, is it the side effect of the

medications? Is it that my subconscious (sp) really wants me to stop

putting these meds in my body, or have I been abducted.

I know that in a Dream

Analysis that this is that place of feeling so out of control, and so I want to

hide.

Tonight I don't have

the answers, and that too is hard.

Thanks for letting me

vent,

love to all,

Tracie

NS Co-owner/moderator

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