RE: talking to family/religious content

[Guest guest]

Tracie,"But you don't look sick" comes to mind with some family/friends who unless our faces are falling off or we have the look of an ex-nuclear attack victim with "in your face" obvious horrendous effects when looking at us. This is denial on their part (I've been in denial myself many times...) and them wishing for us to go back to the way we were. For the very people who we believe and have faith that they will see/understand that sarcoidosis can be a debilitating and disasterous disease, many of us feel hurt when what we go through is minimized, especially by those we love. I for one have been to the place where you are writing from. I have wondered also if it were the meds. Then I come back and believe it is maybe part meds but also utter exhaustion on my part at this nasty disease that not only threads its way through me but also my family. My life,

that I once took for granted, is hanging by a thread and I am trying to not do a "Tarzan" and swing too far one way or another and break it. I explained it to one of my many doctors once that it's like I'm treading water with no land in sight. We have to fight too many people (doctors, insurance, etc.) so when we feel hurt by family that is the bottom of the line. I reach a point where I "say it like it is" and let it out to my family. No explosion to them, just pouring out my feelings in the hopes that some bit will stick in some deep recess of their brains where they can remember why mom/wife is in the place that she's in.I have no answers except to say that my peace is found within and only through my faith in God and Jesus Christ to get me through. I will not give up the fight because I am meant to be here until He decides it's over. I read this on Pastor Stanley's site: "I may not know the

plan but I know the Planner". May God be with you Tracie and hold you in His most loving arms.Blessings and Love,Beckytiodaat@... wrote: 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/moderatorStart the year off right. Easy ways to stay in shape in the new year.

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[Guest guest]

Becky

you said it so well, I may not know the plan but I know the planner. Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Mac Tosh

Sent: Saturday, January 19, 2008

5:13 AM

To: Neurosarcoidosis

Subject: Re:

talking to family/religious content

Tracie,

" But you don't look sick " comes to mind with some family/friends who

unless our faces are falling off or we have the look of an ex-nuclear attack

victim with " in your face " obvious horrendous effects when looking at

us. This is denial on their part (I've been in denial myself many times...) and

them wishing for us to go back to the way we were. For the very people who we

believe and have faith that they will see/understand that sarcoidosis can be a

debilitating and disasterous disease, many of us feel hurt when what we go

through is minimized, especially by those we love. I for one have been to the

place where you are writing from. I have wondered also if it were the meds.

Then I come back and believe it is maybe part meds but also utter exhaustion on

my part at this nasty disease that not only threads its way through me but also

my family. My life, that I once took for granted, is hanging by a thread and I

am trying to not do a " Tarzan " and swing too far one way or another

and break it. I explained it to one of my many doctors once that it's like I'm

treading water with no land in sight. We have to fight too many people

(doctors, insurance, etc.) so when we feel hurt by family that is the bottom of

the line. I reach a point where I " say it like it is " and let it out

to my family. No explosion to them, just pouring out my feelings in the hopes

that some bit will stick in some deep recess of their brains where they can

remember why mom/wife is in the place that she's in.

I have no answers except to say that my peace is found within and only through

my faith in God and Jesus Christ to get me through. I will not give up the

fight because I am meant to be here until He decides it's over. I read this on

Pastor Stanley's site: " I may not know the plan but I know the

Planner " .

May God be with you Tracie and hold you in His most loving arms.

Blessings and Love,

Becky

tiodaat (AT) aol (DOT) com

wrote:

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

Start the year off right. Easy

ways to stay in shape in the new year.

Looking for last minute shopping deals? Find

them fast with Yahoo! Search.