Re: ssd for this disorder

[Guest guest]

I am really confused. I looked at your profile and there is a

photo of a male on a bike but your profile says you are a disabled

woman. Do you have PA? Are you disabled? And if so, how are you able to

pay your bills? This disease put me out of work for 6 months this year.

I had to get on medicaid to afford Enbrel so I could have some hope of

getting well enough to get a job. I got a job but apparently it's too

late... I just spoke with my landlord and I'm about to get evicted. I'm

a month behind and have no way of getting caught up for a month or two.

I don't know where I'll go. I have a special needs child who will fall

apart if we have to move. Reasons like this are why we get on SSD. ---

In , " razzle51 " <remmel@...> wrote:

>

> you can get SSD for this disorder ????????????? WHy would you , just

> curious .

>

> [Editor's Note: Because your feet are too crippled to stand on, your

hands are too damaged to be able to type on a pc, your spine leaves you

writhing in pain, because the meds create unimaginable fatigue...oh,

many here could go on and on. For the lucky ones who do not have much

pain or much damage (yet), be grateful, but many people are no longer

able to work as this disease progresses. Kathy F.]

>

[Guest guest]

*I'm with Betz on the confusion about the profile.*

Oh Betz, I'm so sorry to hear about your latest problem! Can you not

get assistance on the rent? Is there anyone who can help you if SSD

doesn't? I can't even imagine how a move would affect your precious

girl.

I just got done venting on my blog. My dad was in town today and he

couldn't call me himself to tell me. My granny called.

I haven't seen the man in over three years and I've talked to him

once during that time period (when I happened to be at granny's when

he called her).

The reason he didn't call himself, according to granny, was " he was

afraid it might cause trouble " . WHAT?

Plus he didn't know she called - she just thought it might be a good

time for us to get together. If he really cares, worries, wants to

see me, etc. then he should call me himself. It's always struck me as

odd that everything seems to be funneled through granny. It's time

for this nonsense to stop.

Plus my mom had to have a stress test done last Friday because her

blood pressure has been up and they've put her on a low dose bp

medicine. Heart disease runs rampant in her family, so it's got me

spooked.

And the cable on my rear passenger window (for the least stressful

note in my week) broke and will take $325 to fix according to the

glass man in town...so it's literally tied up with plastic cable ties

right now.

I'll keep you in my thoughts and prayers.

Peace, hope and love,

Jenn in Arkansas

> >

> > you can get SSD for this disorder ????????????? WHy would you ,

just

> > curious .

> >

> > [Editor's Note: Because your feet are too crippled to stand on,

your

> hands are too damaged to be able to type on a pc, your spine leaves

you

> writhing in pain, because the meds create unimaginable

fatigue...oh,

> many here could go on and on. For the lucky ones who do not have

much

> pain or much damage (yet), be grateful, but many people are no

longer

> able to work as this disease progresses. Kathy F.]

> >

>

[Guest guest]

Please keep in mind that I am being nice and respectful in this response,

I'll even use smiley's.....

The list of diagnoses so far:

psoriatic arthritis- affects every aspect of my body... hands (cant move

them) feed (can't walk) back (constant burning pain)

psoriasis- self explanitory.... almost 80% covered with it

fibromyalgia- so exhaused all the time that I could sleep a week and still

not feel I had slept a wink, and its like pa but only muscles

endometriosis- I will always have.... appx every 5 yrs I will have to have

surgery

diabetes type II- diet controled but running between 150-200 now...

's disease- fatigue, nauseated constantly, no appetite (not

complaining there) no metabolism, is life threatening w/o meds

depression- dont we all to some degree???

Liver disease- stage 3 liver disease which dictates every single anti

inflammatory or meds out there that I CANNOT TAKE

borderline hypothyroid

and on top of all this, I am continuinuously passing out for no rhyme or

reason and no one seems to care (dr) right now

Can you honestly ask me after reading all of that WHY I would want to file

for disability??????? I'm not trying to be mean at all... it seemed like a

very odd quesiton coming from anyone in this group.... ON top of this, my

child has multiple learning disabilities as well. My life isn't easy, no

one's on here is easy. We deal with some level of pain here. You must be

one lucky duck that you are in such a state that you do not have to think

about how you are physically going to be able to hold a job, to pay your

most basic bills, to feed your family, the list goes on. I dont think Im

unreasonable asking for ssd... the quality of my life has changed

dramatically, my poor husband didnt bargain for what he got... lemme tell

ya... I was a very healthy, skinny vibrant woman when he met me... full of

life... Now I dont like leaving the house unless its for church related

activities or a doc appt. I hope I dont upset you or step on your toes...

Danger Will ~~ she's CRABBY lol..... I probably should have waited

to respond. I have been up over 24 hours, and feel fluish/coldish and I

hope I didnt offend you. I'm just jealous you don't have to worry about

those things =)))))))

On 7/23/06, razzle51 <remmel@...> wrote:

>

> you can get SSD for this disorder ????????????? WHy would you , just

> curious .

>

> [Editor's Note: Because your feet are too crippled to stand on, your hands

> are too damaged to be able to type on a pc, your spine leaves you writhing

> in pain, because the meds create unimaginable fatigue...oh, many here could

> go on and on. For the lucky ones who do not have much pain or much damage

> (yet), be grateful, but many people are no longer able to work as this

> disease progresses. Kathy F.]

>

>

>

[Guest guest]

well said kathy, for those of you lucky enough to keep working, count your

blessings.

susan in ohio

[Guest guest]

Thanks! Great idea! I'm on it! -Betz

>

> betz ,

> contact your local salvation army or the nited way and tell them of

your

> situation with your landlord and your rent . I am sure that they

will help you

> . cathy from ma.

>

>

>

[Guest guest]

Besty,

I don't know how they do it in other states but here

in Texas they have to take you to court before you

have to move. Also try sweet talking him and give him

just a little bit at a time letting him know that you

are trying and this is the best you can do for now. I

know here, some of the churches will help you out. If

all else fails go to the media and tell them how you

are being kicked out and let them know about your

diseases and your daughter's too, I will be willing to

bet that the town will come up with the money for your

rent. They do that here and it works every time. All

you can do is try.My prayers are with you.

Sharon

__________________________________________________

[Guest guest]

The deal is that I've called in all my favors that I know of. I

can't get help from Social Services because I have this job now. I

can't keep the medicaid because I have a job now. I'll try the

United Way. I was out of work for 6 months this year and I had help

then and I just barely made it. The Salvation Army helped me once

when my elec was about to be shut off. I was going for Section * and

my landlord was patient then. He wanted me to tell them that the

rent was 300 more than it was so he would make money off of it so he

was happy to wait. But then I GOT A JOB. It's crazy. Now I see why

people just don't work and keep drawing services. The system makes

it impossible to get ahead once you've gotten behind. I have asked a

my x husbands brother for a loan which I would start to pay back in

Sept. I have not heard back from him so I hope it will not cause an

uncomfortable situation. If he is not willing to do it, I hope he

does not feel odd at parties. I'll be ok about it. I'll still love

them. I had to ask. It was hard. I just did not know what else to

do. So many people have helped me get through this. It got me this

far. Now I have to find a way to get a little bit further. My

landlord has been letting me pay the rent late every month this

year. It's not like he has not tried to understand. He knows I'm

doing my best. But he has bills to pay too. I am going to call the

United Way tomorrow. I'm also going to talk to 's therapist

tomorrow and see if her organization has resources. I'll keep trying

I have one week to get it together. Hard to believe I could come

this far and it not be enough. I was so relieved to be working and

it looked like there was a light at the end of the tunnel. I'll keep

believing though. -Betz

> >

> > I am really confused. I looked at your profile and

there is a

> > photo of a male on a bike but your profile says you are a

disabled

> > woman. Do you have PA? Are you disabled? And if so, how are you

able to

> > pay your bills? This disease put me out of work for 6 months

this year.

> > I had to get on medicaid to afford Enbrel so I could have some

hope of

> > getting well enough to get a job. I got a job but apparently

it's too

> > late... I just spoke with my landlord and I'm about to get

evicted. I'm

> > a month behind and have no way of getting caught up for a month

or two.

> > I don't know where I'll go. I have a special needs child who

will fall

> > apart if we have to move. Reasons like this are why we get on

SSD. ---

>

[Guest guest]

Thanks, Mel. The dad/granny stuff is nothing new though,

unfortunately.

My parents split when I was 10 (technically a lot earlier than that,

but I was too naive to realize it...let's just say the relationship

wasn't the healthiest of situations by the time I was born and he

drove an 18-wheeler so he was on the road a lot) and my dad remarried

about seven months later. Then, he didn't tell ME or HIS MOM (the

granny mentioned) for another five months (divorce from mom final in

Nov., married following June, told me and granny at Christmas and

brought them home on New Year's).

He couldn't tell me when he filed for divorce or when it was final. I

had to overhear that in a conversation granny was having with some

friends or somit at her house...when I was 8. Mom thought he should

have to tell me since he filed. He couldn't tell me when it was final

either. He cried when he told me about his second wife...who he met

at a gas station in PA...and I feel she is part of the reason we've

not been able to forge some kind of relationship as I got older.

However, I'm 32 going on 33 and it's time for this insanity to stop.

So, even though I love him, I'm going to pack up his Christmas

presents from the past three years and mail them to him asap. Mom

says she doesn't think I should even put a note in. If I did, I'd

just give him a piece of my mind and that wouldn't be good...besides

I don't know that I have a piece to spare. Plus, even though it will

hurt him and me to do this, but the next time he sends a check at

Christmas to soothe his conscience - it's going back. No matter how

much I might need the dough at the time. Love can't be bought...and I

love him anyway...but he doesn't seem to get that.

The car window is the car window. The car had to have brakes a few

weeks back and I still owe mom for that ($190). I don't even have

this car paid off yet. Like I told a friend, I love the way it runs,

drives, etc. but I'm beginning to hate it due to its expensive parts!

The good news *there's a light at the end of the tunnel* is mom's

tests showed nothing...and thanks to the low dose blood pressure med

they've got her on her bp's back under control.

*OOOOHHHH I hear that " Big O " is on in the next room*

Thanks for your good wishes.

Peace,

Jenn in Arkansas

> >

> > *I'm with Betz on the confusion about the profile.*

> >

> > Oh Betz, I'm so sorry to hear about your latest problem! Can you

not

> > get assistance on the rent? Is there anyone who can help you if

SSD

> > doesn't? I can't even imagine how a move would affect your

precious

> > girl.

> >

> > I just got done venting on my blog. My dad was in town today and

he

> > couldn't call me himself to tell me. My granny called.

> >

> > I haven't seen the man in over three years and I've talked to him

> > once during that time period (when I happened to be at granny's

when

> > he called her).

> >

> > The reason he didn't call himself, according to granny, was " he

was

> > afraid it might cause trouble " . WHAT?

> >

> > Plus he didn't know she called - she just thought it might be a

good

> > time for us to get together. If he really cares, worries, wants to

> > see me, etc. then he should call me himself. It's always struck

me as

> > odd that everything seems to be funneled through granny. It's time

> > for this nonsense to stop.

> >

> > Plus my mom had to have a stress test done last Friday because her

> > blood pressure has been up and they've put her on a low dose bp

> > medicine. Heart disease runs rampant in her family, so it's got me

> > spooked.

> >

> > And the cable on my rear passenger window (for the least stressful

> > note in my week) broke and will take $325 to fix according to the

> > glass man in town...so it's literally tied up with plastic cable

ties

> > right now.

> >

> > I'll keep you in my thoughts and prayers.

> >

> > Peace, hope and love,

> > Jenn in Arkansas

> >

> >

>

[Guest guest]

.. Jenn....I love you to death so I'm sticking my nose in here. I

just want to give you something to think about... and since I have a

family that is far far more disfunctional than yours so I've earned

some stripes in this department. Take it with a grain of salt if you

wish. You are so bright...I'd like you to re-read what you just

wrote and see if you can see it in a different light. I was just

reading this post and got as far as the part where you said that you

suspect that the " new wife " ...or second wife is responsible for you

and your father not being able to forge a relationship....I'm not so

sure about that because before you wrote that, you described a man

who showed no hint of wanting to forge a relationship with you to

begin with. Is it possible that he would have been the way he is now

with or without that woman? You would know better than I but it does

not hurt to have fresh perpective and I have found that even 30

years later, I am having realizations and revelations into the why's

and where's of my past. Sometimes it comes to me like a

big " Ohhhhhhhhhhh " and sometimes it comes in the form of a big

fat " Duhhhhhhhh " . But it comes. lol. I am proud of what you are

doing with regards to your father. Honey...I had to do it with my

own mother because she was ill and hurting the other grandkids.

That's a no brainer. But I had to cut off ties with a sister and a

brother too who's only purpose in my life seemed to be to dish out

hurt, insults and pain. These were not people who knew me well or

ever spent enough time with me to have earned the right to opinions.

It came down to my finally...and I mean it was a long time in the

works...finally asking myself what they had done in the last 10

years that was ever positive or at least neutral and I could come up

with nothing. I could not believe it...not one darn thing. I prayed

about it and sought counsel on it from 2 pastors, friends and even

some strangers.....Christian and non-Christians alike... 100% across

the board they all said it was ok to set myself free from them.

Blood is not a license to hurt. I sent them letters that simply

stated that my choice to disconnect myself from them was not about

unforgiveness because that is the one thing I had gotten to be

pretty good at over the years. It was about self-preservation and

knowing that I could not help them until they were ready to help

themselves. I am sure that they had no idea what I was talking about

but that's what I did. I finished the note saying that I would

always love them and keep them in my prayers and wish only the best

for them and I hoped that they would be able to forgive me for any

hurt my decision would cause them. Short and sweet....no

details....no list of examples as to why it had come to that...they

already knew. I am behind you in this and I understand. It takes

alot of courage. I look forward to hearing about the load that is

lifted from your life when the task is complete. I was shocked at

how it felt later...free and light. You'll do fine girl. I'm glad to

hear about your Mom's test! May things just keep on getting better! -

Betz

>

> Thanks, Mel. The dad/granny stuff is nothing new though,

> unfortunately.

>

> My parents split when I was 10 (technically a lot earlier than

that,

> but I was too naive to realize it...let's just say the

relationship

> wasn't the healthiest of situations by the time I was born and he

> drove an 18-wheeler so he was on the road a lot) and my dad

remarried

> about seven months later. Then, he didn't tell ME or HIS MOM (the

> granny mentioned) for another five months (divorce from mom final

in

> Nov., married following June, told me and granny at Christmas and

> brought them home on New Year's).

>

> He couldn't tell me when he filed for divorce or when it was

final. I

> had to overhear that in a conversation granny was having with some

> friends or somit at her house...when I was 8. Mom thought he

should

> have to tell me since he filed. He couldn't tell me when it was

final

> either. He cried when he told me about his second wife...who he

met

> at a gas station in PA...and I feel she is part of the reason

we've

> not been able to forge some kind of relationship as I got older.

>

> However, I'm 32 going on 33 and it's time for this insanity to

stop.

> So, even though I love him, I'm going to pack up his Christmas

> presents from the past three years and mail them to him asap. Mom

> says she doesn't think I should even put a note in. If I did, I'd

> just give him a piece of my mind and that wouldn't be

good...besides

> I don't know that I have a piece to spare. Plus, even though it

will

> hurt him and me to do this, but the next time he sends a check at

> Christmas to soothe his conscience - it's going back. No matter

how

> much I might need the dough at the time. Love can't be

bought...and I

> love him anyway...but he doesn't seem to get that.

>

> The car window is the car window. The car had to have brakes a few

> weeks back and I still owe mom for that ($190). I don't even have

> this car paid off yet. Like I told a friend, I love the way it

runs,

> drives, etc. but I'm beginning to hate it due to its expensive

parts!

>

> The good news *there's a light at the end of the tunnel* is mom's

> tests showed nothing...and thanks to the low dose blood pressure

med

> they've got her on her bp's back under control.

>

> *OOOOHHHH I hear that " Big O " is on in the next room*

>

> Thanks for your good wishes.

>

> Peace,

> Jenn in Arkansas

>

> ---

[Guest guest]

ALL IS WELL!!! The money will be here tomorrow...loan from x-in laws

who don't care if I pay it back but I'll have to at least try. My

church already helped me this year. And all I've been able to give

them back was the green, orange and purple ice pops that

won't eat! lol. I figured they could use them for Vacation Bible

School. I will be ok now. I just got scared. It took me 6 months to

get scared though. After I read your responses I was able to regroup

and remember how much I had survived this year and remind myself

that I'd keep on surviving. It's going to be ok. Whew.

Still....people just don't know what this disease can do to your

life. It wrecks havoc on all levels. We are a strong lot. Thank you

for boosting me along when I felt weak my friends. -Betz

> > >

> > > I am really confused. I looked at your profile and

> there is a

> > > photo of a male on a bike but your profile says you are a

> disabled

> > > woman. Do you have PA? Are you disabled? And if so, how are

you

> able to

> > > pay your bills? This disease put me out of work for 6 months

> this year.

> > > I had to get on medicaid to afford Enbrel so I could have some

> hope of

> > > getting well enough to get a job. I got a job but apparently

> it's too

> > > late... I just spoke with my landlord and I'm about to get

> evicted. I'm

> > > a month behind and have no way of getting caught up for a

month

> or two.

> > > I don't know where I'll go. I have a special needs child who

> will fall

> > > apart if we have to move. Reasons like this are why we get on

> SSD. ---

> >

>

[Guest guest]

Wowee...you thought of everything! I forgot about the media. The

landlord has been patient with me all year. So it's not an all of

the sudden thing. I got the money from my x brother in law..it's in

the mail so I'll be ok after all. Whew. Now I just have to get this

infection cleared up so I can get back on my Enbrel. -Betz

>

> Besty,

> I don't know how they do it in other states but here

> in Texas they have to take you to court before you

> have to move. Also try sweet talking him and give him

> just a little bit at a time letting him know that you

> are trying and this is the best you can do for now. I

> know here, some of the churches will help you out. If

> all else fails go to the media and tell them how you

> are being kicked out and let them know about your

> diseases and your daughter's too, I will be willing to

> bet that the town will come up with the money for your

> rent. They do that here and it works every time. All

> you can do is try.My prayers are with you.

> Sharon

>

> __________________________________________________

>

[Guest guest]

I did not catch your name, but you said it all when you wrote that

email,don't feel sorry about anything you wrote. My friends can't

understand why I get SS, they don't understand that there are days

that I can't get out of bed it uses too much energy. Like you I can

sleep for days at a time with my sister waking me up to take my

meds. Unlike you I do not have a thyroid. So I blew up like a

balloon. I had a husband who said this is not the woman I married

see ya......good rindance. I have a 13 yr old thank God he does not

have special needs he is the other way around has been in the gifted

and talented program since 1st grade. So thay have a lot of

different things that they do with these children, some of it cost

money some does not. This year they finally realized that I do not

have any money how can you on SS?? So they put him in what is called

the AVID program, which they will stay with him until he graduates

high school and he can go to any college in Texas tht he wants to

has to be 4 years and they are paying for it all!! I thank God for

that everyday because I will never have the money to send him to

college, and it would be a real waste. I tend to ramble sorry but

chemo brain and brain fog together it's a wonder I know my own name.

I do not have diabetes but I am a nurse (retired) and I know what

you are going through. I loved taking care of the sickest people,

because once they were well they would always thank me for helping

them. I can't work u have to be able to write to be a nurse, and my

fingers no longer work to that ability. I can't take any of the meds

like you I have had cancer 3 x's and I am not going to put a poison

in my body so that my immune system will be worse than it is now.

Plus I have a heart mummur, what my PCP calls it but the valve at

the end of the beat does not close fast enough. She said we will

keep a watch on it. It causes me at times to feel faint, out of

breath, and weak once it happens my heart also skips a beat about

every 15th beat trying to catch up for the valve not closing fast

enough. I agree with you all the way, how can you work when you

don't know what the next day holds for you. Sometimes my feet are so

swollen I can't put on a pair of shoes. Sometimes my belly is so

swollen that all I can wear is a gown. Like you said whoever wrote

that must not have it too bad yet. I am happy for that person, I

would not wish the pain and misery that comes with this disease. I

could keep going but I will stop now and go try to make dinner,

notice the word try, there are times I can't stand up long enopugh

to do that. Sharon

- In , Mel <celticangyl@...> wrote:

>

> Please keep in mind that I am being nice and respectful in this

response,

> I'll even use smiley's.....

>

> The list of diagnoses so far:

>

> psoriatic arthritis- affects every aspect of my body... hands

(cant move

> them) feed (can't walk) back (constant burning pain)

> psoriasis- self explanitory.... almost 80% covered with it

> fibromyalgia- so exhaused all the time that I could sleep a week

and still

> not feel I had slept a wink, and its like pa but only muscles

> endometriosis- I will always have.... appx every 5 yrs I will have

to have

> surgery

> diabetes type II- diet controled but running between 150-200 now...

> 's disease- fatigue, nauseated constantly, no appetite (not

> complaining there) no metabolism, is life threatening w/o meds

> depression- dont we all to some degree???

> Liver disease- stage 3 liver disease which dictates every single

anti

> inflammatory or meds out there that I CANNOT TAKE

> borderline hypothyroid

> and on top of all this, I am continuinuously passing out for no

rhyme or

> reason and no one seems to care (dr) right now

>

>

> Can you honestly ask me after reading all of that WHY I would want

to file

> for disability??????? I'm not trying to be mean at all... it

seemed like a

> very odd quesiton coming from anyone in this group.... ON top of

this, my

> child has multiple learning disabilities as well. My life isn't

easy, no

> one's on here is easy. We deal with some level of pain here. You

must be

> one lucky duck that you are in such a state that you do not have

to think

> about how you are physically going to be able to hold a job, to

pay your

> most basic bills, to feed your family, the list goes on. I dont

think Im

> unreasonable asking for ssd... the quality of my life has changed

> dramatically, my poor husband didnt bargain for what he got...

lemme tell

> ya... I was a very healthy, skinny vibrant woman when he met me...

full of

> life... Now I dont like leaving the house unless its for church

related

> activities or a doc appt. I hope I dont upset you or step on your

toes...

> Danger Will ~~ she's CRABBY lol..... I probably should

have waited

> to respond. I have been up over 24 hours, and feel fluish/coldish

and I

> hope I didnt offend you. I'm just jealous you don't have to worry

about

> those things =)))))))

>

>

>

>

>

>

> On 7/23/06, razzle51 <remmel@...> wrote:

> >

> > you can get SSD for this disorder ????????????? WHy would

you , just

> > curious .

> >

> > [Editor's Note: Because your feet are too crippled to stand on,

your hands

> > are too damaged to be able to type on a pc, your spine leaves

you writhing

> > in pain, because the meds create unimaginable fatigue...oh, many

here could

> > go on and on. For the lucky ones who do not have much pain or

much damage

> > (yet), be grateful, but many people are no longer able to work

as this

> > disease progresses. Kathy F.]

> >

> >

> >

>

>

>

[Guest guest]

Hi Betz,

Advice is welcome. Dad was around some when I was small. When I was

a little was when he was the best with me, which ironically is when

the marriage began to fall apart...technically that started after I

was on the way and before I arrived (he started cheating while I was

in utero)...but I wasn't aware of that until I turned 23 and mom

slipped one night during a conversation and said something that

piqued my interest and struck me oddly - so I made her tell me

EVERYTHING then and there in the car on my 23rd birthday. She said

she didn't tell me because she didn't want me to hate him...which,

for the record, I don't. I do hate what he did to her though.

As I got older, he was living in towns that steadily became farther

and farther (one hour became two hours, then 2 1/2 hours) away. You

get the picture. I get what you're saying though. If he really

WANTED to be there for my concerts, plays, etc. he would have made a

point to be there.

But it's also a bit of " Cat's in the Cradle " syndrome *I

think*...always working...can't afford to take off of work. The

excuse when I graduated from college was that I didn't give him

enough notice and he couldn't get off of work. Which maybe I'm just

rationalizing again.

Granny, at one point several years ago, told mom the wife tries to

convince him I don't love him because I don't call, write etc..

I don't call/write because:

1. I'd have to go through her to get to him ...

2. I really don't feel that I know him that well and some of what I

do know (such as his past fondness for the " n " word and another

derogatory term...it really means a bunch of sticks...both of which

I have repeatedly asked him not to use around me - due to the fact I

have several black friends and friends that other crude word is used

to describe, plus I do not believe I have the right to judge anyone -

I do make my fair share of mistakes and bad moves in this life) I

can't stand.

3. I'm not up for awkward silences over the telephone line - which I

hate talking on the phone anyway and I could give them the names and

numbers of a bunch of friends who would testify that I do not call

them. We e-mail or IM...or meet face to face...no phones...

I've just never been a phone person - other than with mom when I was

three hours from home - and I'm even less of one after three months

of working as a telemarketer at a balloon factory.

As for letters, I just wouldn't know what to say. Especially in

light of recent events.

Which if he believes that I would or could ever just stop loving him

entirely...that's his own fault.

I guess I'm entering a phase in my life where I'm " weeding the

garden " so to speak of the people that are nothing but poison to me.

I have a cousin on the other side I do not associate with, but a

cousin and a parent are two entirely different things.

Last year during my most horrendous flare since onset, two of my

closest friends and confidantes were so wrapped up in themselves

(they were getting married) that they couldn't take five minutes to

ask me how I was doing or reply to my emails.

Justifiably, they were busy and excited, but at the same time I had

been helping them plan that wedding and acquire items they wanted as

cheaply as possible by spending tons of time shopping around for

bargains (even purchasing things out of my pocket and letting them

reimburse me later) before old " Art " reared his head and rendered me

barely able to walk, work or do menial tasks *You gals and guys know

the ones...brush your hair, brush your teeth, button a shirt, blow

dry your hair, walk across the room, pour a beverage. You know*.

They were very upset when I informed them I would not be able to be

their wedding photographer as planned due to my condition - and this

information was provided two or three months in advance.

The bride, who I had only known for maybe four years, emailed to say

they still wanted me there at the wedding regardless of me not being

the photographer. I had to work that Saturday, so I didn't make it.

She still speaks to me on occasion through our blogs.

The groom, who was my best friend of 10+ years, wouldn't return any

of my messages (in any form). I finally decided that he was not the

kind of friend I need in my life.

I recently saw him unexpectedly as I stood in line at Wal-Mart. I

didn't speak. He just yelled " Are you not even going to speak to

me? " but then went to talking to someone at the next register - so

I'm not 100% sure that was directed at me, but I imagine it was. If

it was and the other person just started talking to him due to his

yelling, I hope he was embarrassed...even just a tiny bit.

Let's just say I tend to learn lessons the hard way, and some

others' assessment (including mom's) of the " best friend " just being

a user who had me around to carry out various tasks, take him places

in my car with my gasoline, and do things he needed done for him

seemed to ring *albeit very sadly* true.

I had bought a collectible book for him as a wedding gift...last one

he needed to complete a collection of one author. First edition book

from 1955. I got it cheap, person didn't know what they had, mom

says she'd sell it. I could probably make a good profit, but I just

don't know what to do with it. Especially since his wife is aware I

bought it for him. So there it sits in the cupboard.

I haven't sent dad's gifts yet. Some of mom's friends said they

think I should just take them back to the stores and get my money

back and forget it. I just don't know what to do at this point...

And now for the latest twist in the soap opera. I walk in at 2 a.m.

Wednesday after getting off a 17 hour day at work...and mom's still

up. She comes in the living room and says " the rest of your mail is

over there, but I opened this " and hands me an envelope.

The envelope is from granny who was put in the local nursing home on

Monday - dad couldn't even stick around to do that - one of my

cousins took her...and it contains two $100 bills and a scrap of

paper with " one for your mother " on it.

I guess now I need to go to the nursing home to find out what this

is about, but I dread it. I'm tired of fighting.

I appreciate you guys and gals so much for letting me talk this out.

Peace.

Jenn in Arkansas

[Guest guest]

Late posting - again. Congrats Betz! Glad to hear you have ex-in-

laws

who understand.

Peace,

Jenn in Arkansas

>

> ALL IS WELL!!! The money will be here tomorrow...loan from x-in

laws

> who don't care if I pay it back but I'll have to at least try. My

> church already helped me this year. And all I've been able to give

> them back was the green, orange and purple ice pops that

> won't eat! lol. I figured they could use them for Vacation Bible

> School. I will be ok now. I just got scared. It took me 6 months

to

> get scared though. After I read your responses I was able to

regroup

> and remember how much I had survived this year and remind myself

> that I'd keep on surviving. It's going to be ok. Whew.

> Still....people just don't know what this disease can do to your

> life. It wrecks havoc on all levels. We are a strong lot. Thank

you

> for boosting me along when I felt weak my friends. -Betz---

[Guest guest]

Hi Janet,

A-men to that. God is definitely the " ultimate rose " for anyone's

garden. I'm so glad to have a group I can turn to who understands all

the frustrations I deal with PA and non-PA related.

Thanks for the encouragement and love,

Jenn in AR

P.S. I think Betz should think about being a counselor. My students

used to tell me that because they could come to me with their

troubles. However, I'm such an emotional person I always carried

their concerns with me long after I left. I can't remember the exact

quote, but it's something about " I never ask the wounded heart how it

feels, but I become the wounded heart itself " ...that one resonates

with me...perhaps soon I'll find my random quote book and can find

it. I have it in there.

>

> Jenn,

> I'm sorry for being late, I'm still reading through the posts from

being out

> of town. You know you can spill whatever is bothering you to us at

any

> time. We may not have all the answers, but we have all the

compassion and

> prayers you need. You need only ask.

> I had my dad all the time growing up. He passed away when I was

35 years

> old and I still felt cheated, so I can imagine how you must feel

for not having

> close contact with yours. God the Father of us all has always been

there.

> We love you too.

> Janet in Ca

>

>

>

[Guest guest]

I'm in tears.....we WILL meet someday. One way or another. -Betz---

In , Mel <celticangyl@...> wrote:

>

> I agree about betz!!! I feel incredibly blessed to have met her,

and feel

> God had his hand in that. We have children with almost identical

> diagnoses...I can't tell you how good it feels to have someone to

talk to

> and with about it. It can be trying dealing with an autistic

child with

> aspergers. People look at me like control that brat geesh, a part

of me

> wants to tell them he's autistic and sometimes i do. I know this

list is

> strictly PA and not to be off topic if it can be helped.... but I

felt the

> need to tell everyone what a blessing Betz has been to me.. and

amazingly

> continues to offer suggestions and help... we are just starting

this process

> and only found out about 6 mos ago, she's been down this road

awhile and has

> pricelss life experience and advice.... I wish we could meet in

person!!!!

>

> in Ohio

>

>

> On 7/30/06, sgrace_otsr <sg_otsr@...> wrote:

> >

> > Hi Janet,

> >

> > A-men to that. God is definitely the " ultimate rose " for anyone's

> > garden. I'm so glad to have a group I can turn to who

understands all

> > the frustrations I deal with PA and non-PA related.

> >

> > Thanks for the encouragement and love,

> > Jenn in AR

> >

> > P.S. I think Betz should think about being a counselor. My

students

> > used to tell me that because they could come to me with their

> > troubles. However, I'm such an emotional person I always carried

> > their concerns with me long after I left. I can't remember the

exact

> > quote, but it's something about " I never ask the wounded heart

how it

> > feels, but I become the wounded heart itself " ...that one

resonates

> > with me...perhaps soon I'll find my random quote book and can

find

> > it. I have it in there.

> >

> >

> >

> > >

> > > Jenn,

> > > I'm sorry for being late, I'm still reading through the posts

from

> > being out

> > > of town. You know you can spill whatever is bothering you to

us at

> > any

> > > time. We may not have all the answers, but we have all the

> > compassion and

> > > prayers you need. You need only ask.

> > > I had my dad all the time growing up. He passed away when I was

> > 35 years

> > > old and I still felt cheated, so I can imagine how you must

feel

> > for not having

> > > close contact with yours. God the Father of us all has always

been

> > there.

> > > We love you too.

> > > Janet in Ca

> > >

> > >

> > >