Coping

[Guest guest]

Sue,

I'm sorry that alcoholism runs in your family. I have an idea of how

hard it can be, as I've had many friends who have loved ones with alcohol

problems. It must be hard to watch. With this and AIH, it sounds as if

you've had many challenges in your life, which you've found the strength to

live with. What do you find to be your most helpful outlets, or coping

mechanisms (if this is not too personal)?

>From: Roselle50@...

>Reply- onelist

> onelist

>Subject: Re: [ ] to introduce myself

>Date: Sun, 9 May 1999 18:15:12 EDT

>

>From: Roselle50@...

>

>

>:

>

>The good thing about not drinking is that alot and I mean ALOT OF MY

>FAMILY

>HAVE DRINKING PROBLEMS. My father had a big one and he died at 93 1/2

>still

>drinkup up to about six months before he passed away in 1996. I have a

>sister that is not drinking now but has a problem falling of the wagon.

>But

>she has been sober for 10 years now. One sister who drinks all the time

>and

>another sister that seems to be doing alot of it lately too. So I guess if

>I

>could drink I probably be just like them.

>

>Sue AIH

>Wisonsin

>

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[Guest guest]

:

It is usually my daughter that helps me through. I think sometimes it is

really unfair I get the liver disease with all the drunks in my family.

Sometimes just going shopping, or at least walking around the stores helps or

even a nice big ice cream cone.

I slept alot this weekend because of the changes of the medicine is really

raising hell with my body and emotions. I do feel better today but not much.

I am washing some clothes that my husband didn't get done. I try but I

really can't do much around the house because after working just the 5 1/2

hours it really takes a toll on me. But then again I have Halo my dog to

love and walk. She helps me also.

Sue AIH

WI

[Guest guest]

Sue,

I forgot to tell you..I went out and bought a big tub of MINT CHOCOLATE CHIP

ICECREAM today! It really works!!

>From: Roselle50@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Coping

>Date: Mon, 10 May 1999 22:00:24 EDT

>

>From: Roselle50@...

>

>:

>

>It is usually my daughter that helps me through. I think sometimes it is

>really unfair I get the liver disease with all the drunks in my family.

>

>Sometimes just going shopping, or at least walking around the stores helps

>or

>even a nice big ice cream cone.

>

>I slept alot this weekend because of the changes of the medicine is really

>raising hell with my body and emotions. I do feel better today but not

>much.

> I am washing some clothes that my husband didn't get done. I try but I

>really can't do much around the house because after working just the 5 1/2

>hours it really takes a toll on me. But then again I have Halo my dog to

>love and walk. She helps me also.

>

>Sue AIH

>WI

>

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[Guest guest]

Dear Sue,

I'm sorry you're having such a tough time right now. I hope you feel better

soon. I've had similar thoughts to you, in regards to the unfairness of

this disease (especially, since you're not the drinker in the family). I've

watched many acquaintances brutally abuse their bodies over the last few

years. When I was diagnosed, I thought it was unfair because I've been

pretty responsible in respect to my health.

I've always had the philosophy that everything happens for a reason, and

something can be learned from every thing you go through. I keep wondering

where this will lead me. So far, I'm living an even healthier lifestyle

than before (vegetarianism etc.). I guess we'll see... It had better be

good!!

I'm glad you have Halo to keep you company and take YOU for walks (my Dad

has always made the comment " Oh, there's another dog walking it's human! " -

corny, eh?!? Gotta love him...). Again, I really hope you feel better very

soon. I'll be thinking about you,

>From: Roselle50@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Coping

>Date: Mon, 10 May 1999 22:00:24 EDT

>

>From: Roselle50@...

>

>:

>

>It is usually my daughter that helps me through. I think sometimes it is

>really unfair I get the liver disease with all the drunks in my family.

>

>Sometimes just going shopping, or at least walking around the stores helps

>or

>even a nice big ice cream cone.

>

>I slept alot this weekend because of the changes of the medicine is really

>raising hell with my body and emotions. I do feel better today but not

>much.

> I am washing some clothes that my husband didn't get done. I try but I

>really can't do much around the house because after working just the 5 1/2

>hours it really takes a toll on me. But then again I have Halo my dog to

>love and walk. She helps me also.

>

>Sue AIH

>WI

>

>------------------------------------------------------------------------

>Get involved. Share your thoughts!

>

>Join the ONElist Weekly Survey. Go to homepage for details.

>------------------------------------------------------------------------

>Please support the American Liver Foundation!

>

>

>

>1.) To subscribe send e-mail to -subscribeonelist

>

>2.) To UNsubscribe send to -unsubscribeonelist

>

>3.) Digest e-mail format send to -digestonelist

>

>4.) Normal e-mail format send to -normalonelist

[Guest guest]

:

Thanks for the note. I have enough stress on me and today I found out there

will be changes in the company I work for. I work for the nicest nicest man

that owns the company but soon I get to work for his brother. I worked for

him about 9 years and he sometimes can be very different. I like him but I

always worry who will get fired next. I've seen this company do that alot.

I was told that since I am under doctors care and have a chonic disease that

they can not fire me but I guess I better do some research on the matter.

Have a nice Wednesday

Sue AIH

Wisconsin

[Guest guest]

:

I went out in the rain for ice cream sandwiches at 9:30 tonight. I needed a

fix.

Sue AIH

Wisconsin

[Guest guest]

Sue,

We moved to LV in July of 1997 and my husband went to work for a large

national engineering firm in September. By April of 1998, his back

problems were back and even worse. He'd had surgery in 1996 for herniated

disks and disk compression. At the end of April 1998 he had to take

disability leave (with, fortunately, very generous disability pay insurance

plus 100% of all of our medical, dental and life insurance paid by the

disability insurance company.)

Since he's been out, his employer has actually closed down the entire

department he was in and let everyone go - but Bob! I don't think they can

do it. Of course, when he tries to go back to work, who knows what will

happen. I worked with a woman in Seattle who'd had a kidney transplant and

the company was forced to " accomodate " her by the American Disability Act.

I also worked with a woman who had an aggressive form of cancer that was in

remission and that employer found a way to cut her hours and her salary. I

think that what they do might depend on how well they know the law or how

good their legal advice is, or maybe what kind of people they are. I'd

definitely arm myself with information about what you can and should do,

just in case someone decides to play some games. But, I certainly hope

that doesn't happen to you.

Take care,

Geri

[Guest guest]

Geri:

Thanks for the information. I will start looking for answers in Wisconsin

law.

Sue AIH

Wisconsin

[Guest guest]

HI Lemara:

What you describe sounds to me like the all-too-familiar demon, depression.

I hope you will talk to the doctor again and get some help for this for

yourself. Depression is very treatable and untreated depression causes

great suffering.

Steve has depression as another primary dx, along with OCD. MDD is on both

sides of his family (resulting in suicide on one side) and I notice in

myself dysthymia of quite long standing. In fact I am considering

returning for psychotherapy and taking something as my recovery seems to be

slow right now. It is hard to tell how much of this is the natural result

of living with a child with OCD and other alphabet soup and how much is

shared biology.

As reminds us we need to take care of ourselves so we can take care

of our families. Good luck, take care, aloha, Kathy (H)

kathyh@...

At 03:02 PM 01/29/2000 EST, you wrote:

>From: LemaraMo@...

>

>Thank you, Jule, for the advice. I am taking vitamins now, which do seem to

>help. For quite a while, I couldn't stop crying. I cried at everything. I

>thought I might be going thru the change but my doctor felt it was anxiety.

>He did suggest an antidepressant-I think Paxil. He said sice we were seeing

>a psychiatrist already that I should speak to him about me as well. I just

>haven't done it. I guess I feel like I should be able to cope without it.

>We have a new psychiatrist now that I like a lot, although we've only met

>with her once so far. Maybe I will talk to her about it. I will also look

>for the audiotapes you recommended. I know I need to fit in a little time

>for myself but I never seem to be able to do it. My 5 year old won't go to

>bed until I do, and is sleeping with me, so it's hard to get any time. If I

>put him to bed and try to stay up, he's constantly up asking me when I'm

>coming to bed. Unfortunately, he's seen Shaun having trouble (anxiety

>attacks, crying, arguing) to may times. He actually handles it better

than I

>would think. He'll come to me and say " Shaun says he needs help Mom " , when

>Shaun is crying and begging for help, or he'll go sit next to Shaun and rub

>his back when Shaun is upset. But I'm sure he's scared and doesn't

>understand.

>

>Patti, I'm so glad to hear that Molly was able to make her list. I have

>tried to get Shaun to do the same but he hasn't been able to yet. We did

>talk about it again last night and he said he would start working with his

>therapist on this. I think he's finally opening up to his therapist, so I'm

>hopeful. I love Molly's website name!

>Lemara in MI

[Guest guest]

In a message dated 00-02-23 22:20:07 EST, you write:

<< How did you manage to get in home help? I need the same thing, but

services

are so limited here for disabled. Any info would be appreciated when you

are up to it! Thanks, Christie

>>

Dear Christie,

I've never been in a position to have to get in-home help (yet anyway...) -

but I have some ideas.

If you have a college near you, perhaps a student (nursing or physical

therapist - even a pre-med person) is looking for an opportunity to do

internship / independent study or even log some " community service " hours

(some high schools here even require a certain number of hours logged).

Could also call churches, county, township, city. Also, look under dog

training (seriously) in yellow pages. If there is a school in your area

which teaches others to train their dogs to be visiting dogs in hospitals,

etc. - this may be a great resource to find some kind folks looking to help

others out.

Any community organizations could be a resource, too... Also could check

with social service person at local hospital(s). Perhaps an extra volunteer

could come over & help you out.

Most towns have " food pantries " - where donated food is distributed once per

week or every other week for those who are unemployed or enrolled in govt.

social service programs. These are usually run through churches - call

welfare office & ask for food pantry contact. Have taken a friend to a

couple of these - they're very nice folks who seemed to enjoy helping out

those in need. Perhaps they may know of someone...

Can also contact " religious education " directors for various private schools

- most of these programs here require community service hours to be fulfilled

before students reach a certain level. Usually HS students, I believe.

Hope these ideas help!

Blessings & super velcro hugs,

Chris

[Guest guest]

In a message dated 00-02-27 21:12:10 EST, you write:

<< I do have a social worker and a nurse trying to help at this point.

Not out of funk, but hanging in thanks to you all!

Take care,

Chrsitie

>>

Dear Christie,

SOOOOO glad you've got 2 people trying to help!

You know the old saying, " Where there's a will, there's a way... " I know

you're sick of hearing these cliches but hey - you survived all the BS we all

go through to get treatment & many other hurdles - you'll get through this.

Please know that we're all here for you!!!!

Speaking from experience, as soon as anything - any action - begins to occur,

you'll feel better - just knowing that something is being set in motion...

Feel free to IM or email ANYTIME!

Blessings & velcro hugs,

Chris

[Guest guest]

Dear Barb and

Thank you both for the suggestions! Sorry I take so long to answer, but

mail takes most of my time between the lists and research - and I am SO

tired of dealing with these things!!

I do have a social worker and a nurse trying to help at this point.

Not out of funk, but hanging in thanks to you all!

Take care,

Chrsitie

[Guest guest]

In a message dated 00-02-27 21:12:10 EST, you write:

<< I do have a social worker and a nurse trying to help at this point.

Not out of funk, but hanging in thanks to you all!

Take care,

Chrsitie

>>

Dear Christie,

SOOOOO glad you've got 2 people trying to help!

You know the old saying, " Where there's a will, there's a way... " I know

you're sick of hearing these cliches but hey - you survived all the BS we all

go through to get treatment & many other hurdles - you'll get through this.

Please know that we're all here for you!!!!

Speaking from experience, as soon as anything - any action - begins to occur,

you'll feel better - just knowing that something is being set in motion...

Feel free to IM or email ANYTIME!

Blessings & velcro hugs,

Chris

[Guest guest]

Dear Barb and

Thank you both for the suggestions! Sorry I take so long to answer, but

mail takes most of my time between the lists and research - and I am SO

tired of dealing with these things!!

I do have a social worker and a nurse trying to help at this point.

Not out of funk, but hanging in thanks to you all!

Take care,

Chrsitie

[Guest guest]

remove me from this group

[Guest guest]

This is a terrific, idea, Vicki. I, for one, will also be informing both my

gastroenterologist and my surgeon of the existence of this listserv so that

they can connect folks who are newly diagnosed with a supportive community

as well as use the comments of participants in supporting their work with

patients.

Having an awareness of this resource early on in my illness would have been

a godsend!

coping

Hi Everyone--

Thinking about our recent postings to this list, it's obvious to me that

achalasia, its diagnosis, and treatment procedures pack quite an emotional

punch for many of us.

This is a disorder that can be painful, socially isolating, and confusing.

One of the things I suggest is that we all educate ourselves about how to

stay emotionally healthy while we cope with the diagnosis, treatment, and

management of this disease.

One component of this, I think, is often to educate our medical specialists

about the emotional consequences of this disorder. Too often, it seems,

medical folks lose sight of patients as " whole people. "

We need to remind them about this, AND we need to seek out direct support

that will help us maintain our emotional balance as we also try to make

sure we can eat!

Hope you all have a great weekend--

Vicki

[Guest guest]

, I have much trouble coping, I am on Wellbutrin, but i sometimes

get very depressed, usually around PMS. i also have much anxiety, i have to

speak to my neuro about this, i am at my nervous systems edge and feel

hopeless sometimes. Ativan helps, but it is habit forming so my doctor

allows me a small dose when needed. please check into this to help you cope

for now.

roe

[Guest guest]

Coping

In a message dated 8/30/02 8:52:25 AM Eastern Daylight Time,

KayBraddock@... writes:

Kay, I agree with your statement. Share with us what you mean. It may help us

in coping with our chronic problems. I often wonder to myself...why me, why

do we suffer. What good can come from it, etc. Is this what you are talking

about?

Connie

I guess I feel that although my disability has closed some doors for me it has

opened other doors. I have had more opportunity to spend time with my children

than when I was teaching. I have also had more opportunity to explore hobbies.

One hobby has lately become a part-time job in that I have begun sewing some

horse show clothes professionally. A riding shirt that I made recently won

Champion for machine sewing at the local fair. I will post a photo on the RISG

website.

I also think that my experience with my illness and disability has perhaps

lead to closer relationships with other people. I'm more inclined to help and

be empathetic towards others than I was prior to my Reiter's experience. I

didn't realize how important people are to each other until I experienced the

need for support myself. I try to remember to offer that support to others.

When I first had to stop teaching I felt that if I could not work I did not

deserve to enjoy any other interests. I thought teaching was the only important

thing that I could do. It has taken a decade of adjustment but I'm learning to

enjoy life and feel that I still have something to offer.

Kay

[Guest guest]

Dear Jen, You poor thing. I'm glad you have your mom and aunt to help you. Try to let go of the rage you must feel at that b**** it is not worth your health! STay strong and do take care. A Big HUg-

Coping

Hi Everyone--Thanks for the words of encouragement! I had a rough night last night in trying to sleep as I was pretty much honked off and very upset. I ended up falling asleep after 2 a.m. this morning and woke up around 10:15, which normally I sleep for about 10 hours, soooo I am more then likely headed toward a nap this afternoon. I did pamper myself this morning, took a nice long hot shower and used the smelly soap that I use only for special times, and used my smelly lotion that I use for hot dates, ahahha, so I am pampering myself today. My mom is worried about me and my great-aunt is coming over to visit with me to make sure that I am alright.My mom thinks that I should call the dr's office today, as I had some pretty serious chest pains last night, more like I felt like I was having a heart attack, and plus my spleen is HUGE yet again, as my pants are now down around my hips, and my liver is throbbing, hands are swollen, knees are a cracking, muscles are a hurting, it's bad. But anyways, there's nothing more to report on the she-beast, she hasn't sent me anymore emails and I don't expect her to, nor do I expect my dad to defend me or to say something to her. I do not expect my dad to walk me down the aisle for the wedding, nor do I expect him to pay for the reception, as my fiance' said that he's going to send the contract back to my dad ripped up, and we'll have my mom's name put on the contract. This is really bad, as her daughter is one of my bridesmaids, my half-sister(mom is wife#2, this wife is #3)is suppose to be my flower girl and my half-brother is suppose to be a groomsman, but I think if I talk to their mother that maybe this situation can be saved. Anyways, I'm just taking it slow today, one step at a time, literally!!!Thanks for caring and offering shoulders to cry on!Jen#2

[Guest guest]

>>>>>>If parents would just come out and say my child has a form of

Autism. It doesn't mean the Rain Man, but its on a milder section of

the Spectrum. Then we would get somewhere. But the thing that is

stopping Parents is pride.<<<<<<<<<

Pride, and denial. I have ment many parents who would not accept that their

child was on the spectrum. You could call it anything you wanted, but to call

it autism scared the hell out of them. It scared the hell out of me too, but I

knew something was different with my son. I wasn't necessarily looking for the

magic cure, but I wanted to help him. I knew he was an incredibly smart boy.

Everyone else saw him as a horrible, out of control child. I hated taking him

to be evaluated, because people didn't see what I saw. I remember one such

evaluation when he was 2-1/2. The psychologist said in his report, " Child

appears to be reading numbers and words from posters on the wall, but most

likely is echoing what has been heard in the past. " Stupid idiot.... Of course

he was reading the stuff off the walls! The only words and numbers he recited

were on the walls! It was quite clear. This guy had a stereotyped idea of what

autism was, and he wasted our time.

I know all too well how the denial scenario goes, because my whole family went

through it. They all thought I was nuts to think my son had autism. My husband

was the worst one. Once he finally accepted it, he distanced himself from all

aspects of helping our son, which unfortunatley led to our divorce. I think he

was ashamed of who he was. I have never been, because I know my son has great

potential and I love him for who he is.

I think society, doctors and literature have caused parents to be so fearful of

autism. Most of what you hear about and see is awful, which puts this fear into

people. It doesn't help that when you take your child to a worthless doctor he

says things like; " Prognosis - he/she will most likely never speak and will live

in an institution or a group home. "

Steve, I feel the same way as you do on the spectrum. I think everything from

Apraxia to ADHD fits there. However, I have found myself beating my head

against a wall when it comes to helping " certain " parents see the light. If

they want to go through life with blinders on, than I can't save them or help

them. I try to encourage parents that denial only causes the child to loose

out, but it can be like talking to a brick wall.

I remember meeting a woman who had been convinced by the doctors that her child

merely had ADHD. He was 6, and in Kindergarten. She met my son at school and

asked why he was in special education. I explained that he had autism, and she

mentioned that she was beginning to wonder if her son had it. She asked if she

could bring him to my house, so I could meet him. We arranged a backyard

barbeque, and within minutes of meeting this boy, I knew he had been

mis-diagnosed or the parents were in denial. He made no eye contact. He had no

language. He stimmed like crazy. He never once acknowledged any of us. He was

off the walls. The only thing he did while he was at my house was try to escape

or throw all the toys over the fence into the neighbors yard. He did this for 3

hours, while his Dad retrieved the toys and watched him do the whole procedure

all over again. When it came time to eat, he had to be assisted or he wouldn't

eat. I didn't need to convince the parents that he was autistic. Once they

watched my son, who was 4 at the time, and was functioning way above their son,

they knew. So what became of that boy? I lost contact with the mother, because

from what I could see they were either still in denial or too lazy to help him.

I last heard they placed him into a home. I think the chore of raising him and

helping him was more than they were capable of handling. Very sad.....

a

[Guest guest]

> I give up on some AS groups, because a lot of parents do not want to

> learn anything from the Adult Aspie.

I gave up on ALL those types of groups. But there are groups out

there where the parents are definitely interested in my opinion. They

are out there, you just have to find them. Then the tricky part is

how to describe your opinion without being offensive. It took me a

LOOOONG time to figure out how to do that LOL, but I think I do okay

now, at least most of the time.

Dana

[Guest guest]

Steve: Is there any documentation that ADHD is on the spectrum? I cant seem

to find it anywhere. My son is " all of the above " , and he doesnt qualify

for services because he only has dx's for ADHD, ODD, and Sensory Integration

Dys. with being high in Mercury, Aluminum, and Arsenic. What a joke, he's

right at the " line " of qualifying. Just curious if you knew where I could

find this. I have been hearing that ADHD, is going to be on the spectrum in

the new DSM-IV. along with DSI, and so on.

THanks, Rhonda

[Guest guest]

Dear Eve,

One day at a time, one hour at a time, one minute at a time, even one

second at a time, whatever it takes and some day it will be worth it.

Hugs, Michele

-----Original Message-----

From: eve Sent: Tuesday, July 22, 2003 10:24 PM

I am looking for anyone who can help me to deal with this disease. I

get so frusterated with the pain. Can anyone help??

[Guest guest]

i am trying to hold on, i just had a bout with back spasms that were pretty

severe, didn't know what to do. thank you for writing it feels so good to know

somebody out there understands what i am going through...eve

Michele Townsend <mtownsend29@...> wrote:Dear Eve,

One day at a time, one hour at a time, one minute at a time, even one

second at a time, whatever it takes and some day it will be worth it.

Hugs, Michele

-----Original Message-----

From: eve Sent: Tuesday, July 22, 2003 10:24 PM

I am looking for anyone who can help me to deal with this disease. I

get so frusterated with the pain. Can anyone help??

[Guest guest]

Magnesium before bed helps muscle spasms. 18/day MAEPA fish oil gels for bone

pain become effective in 2-3 weeks. Rita

RE: [ ] coping

i am trying to hold on, i just had a bout with back spasms that were pretty

severe, didn't know what to do. thank you for writing it feels so good to know

somebody out there understands what i am going through...eve

Michele Townsend <mtownsend29@...> wrote:Dear Eve,

One day at a time, one hour at a time, one minute at a time, even one

second at a time, whatever it takes and some day it will be worth it.

Hugs, Michele

-----Original Message-----

From: eve Sent: Tuesday, July 22, 2003 10:24 PM

I am looking for anyone who can help me to deal with this disease. I

get so frusterated with the pain. Can anyone help??