Re: Digest Number 365

[Guest guest]

SueB.~

Well, it's good to see that someone has a positive attitude on this drug. My

sister is not exactly thrilled with it, she already mentioned the " increased

body hair " side effect to me. Her being 16 years old, the " extras " that come

along with these drugs don't get along with her very well.. but we are trying

to convince her that they are saving her life... and they are important to

take. Thanks for your mail...

Alina

Charlotte, NC

[Guest guest]

Leona~

They have been doing lots of experiments with family members transplanting

parts of their liver to the patient... and they've gotten mixed results. My

family has been following the cases closely b/c my sister will need a

transplant someday. We recently (as of last week) heard a news blip about

several cases where the donator actually came down with a strange liver

complication after the donation, and actually died. Has anyone else heard

about this? It is rather important, but I only heard a brief report on it.

Who knows, maybe it was just a rare occurrence...

Alina

Charlotte, NC

[Guest guest]

----------

>Alina,

You know I went for a long time putting up with the extra facial hair

thinking that when I got better it would go away. The doctors had told me

that when I stopped taking Pred and cyclosporin the excess hair would

disappear. I, unfortunately, went along with this for some time. Then, when

I finally found out that this disease is not curable but is manageable, my

whole attitude changed. I spent all my time in my house, because I didn't

want anyone to see me with this balloon face, excess weight and all this

ugly unwanted hair.(and of course they were all telling me how good I

looked). So I asked my specialist if she would do something about the

" look " point blank. She said that if it would make me feel better about

myself - go for it!!!!!!!!!! So I did. I went to the beautician and got my

face waxed. I hadn't done it before because I believed that it would make

the situation worse, getting it waxed would make it grow even more, but

realistically it couldn't grow any more than it was, I was living in a

dream world that I would some day go back to the old me, normal. So I did

it. God it hurt. When I got home my face was like a lobster, but I was

grinning from ear to ear, THE HAIR WAS GONE!!!!!!! Yeah it does hurt but

that little bit of hurt is worth it, I can go out in public and feel

comfortable with at least my face. I can't do a lot about the balloon face

and the excess weight yet but at least I have made a move on one aspect. I

know your sister is young and it may seem radical to do this, but if she is

loosing self respect because of it, it is worthwhile thinking about. Good

luck to you both.

SueB.

[Guest guest]

Dear Alina,

I am currently being evaluated as a living liver donor at the Cleveland

Clinic in Ohio. I am not related either by blood or marriage to the person I

wish to donate to. I researched everything I could get my hands on for

about 3 months before I approached him and made the offer. When we went to

CC for his transplant evaluation, we let everyone know from the start I

wanted to be evaluated as a possible donor. I have now completed the first

phase of their 3 phase process. I had extensive interviews and psyche

counselling to make sure I was doing this for the right reasons and for them

to get to know who I really am. Once I discovered this was an option we

could at least explore, I have immersed myself in finding out everything I

could. I have been told there have been approximately 250 living liver

donor transplants performed in the US. There have been 3 deaths to the

donors. There are complications and risks involved in any surgical

procedure and I think the person willing to donate needs to be informed as

much as they can. I know when I went in the interview with the chief

surgeon and social worker, I quickly found out I had alot of knowledge most

people in my situation do not have. Perhaps it is because I am not just

making an emotional decision to do this. I am 45, educated, a professional,

and a mother of 3 children. I am quite aware of the risks involved but I

feel they are minor as far as I am concerned. This may not be the case with

other people.

If you would like additional info, please email me at Cheryl722@....

I would be happy to discuss this with you further.

Cheryl & Randy

West Virginia

[Guest guest]

Oh, I thought you were to be the recipient. Please excuse my post.

J

>From: Cheryl722@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Digest Number 365

>Date: Tue, 12 Oct 1999 10:34:37 EDT

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>Dear Alina,

>

>I am currently being evaluated as a living liver donor at the Cleveland

>Clinic in Ohio. I am not related either by blood or marriage to the person

>I

>wish to donate to. I researched everything I could get my hands on for

>about 3 months before I approached him and made the offer. When we went to

>CC for his transplant evaluation, we let everyone know from the start I

>wanted to be evaluated as a possible donor. I have now completed the

>first

>phase of their 3 phase process. I had extensive interviews and psyche

>counselling to make sure I was doing this for the right reasons and for

>them

>to get to know who I really am. Once I discovered this was an option we

>could at least explore, I have immersed myself in finding out everything I

>could. I have been told there have been approximately 250 living liver

>donor transplants performed in the US. There have been 3 deaths to the

>donors. There are complications and risks involved in any surgical

>procedure and I think the person willing to donate needs to be informed as

>much as they can. I know when I went in the interview with the chief

>surgeon and social worker, I quickly found out I had alot of knowledge most

>people in my situation do not have. Perhaps it is because I am not just

>making an emotional decision to do this. I am 45, educated, a

>professional,

>and a mother of 3 children. I am quite aware of the risks involved but I

>feel they are minor as far as I am concerned. This may not be the case

>with

>other people.

>

>If you would like additional info, please email me at Cheryl722@....

>

>I would be happy to discuss this with you further.

>

>

>Cheryl & Randy

>West Virginia

>

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

>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

><< text3.html >>

[Guest guest]

I too had a lot of facial hair so since I always got my eyebrows waxed

anyway I told my person who does the waxing to just do it all I didn't

think it hurt much but then I was so glad to get rid of it I relly

didn't care. But now that I am reducing the Pred. it is not so bad.

Pa.

[Guest guest]

Responding to question on OZONATED WATER:

--

I ozonate my own water for years. I initially bought the machine to do

rectal insufflations to kill deadly parasite (shistasome).

To regenerate healthy mucous lining of lungs, stomach and intestines,

I made gruel of wild yam and slippery elm (powder form or open capsules

of same=6 each) and drank daily.

I also (several times weekly) take a tablet of SOD to scavenge free-radicals

that can be left in the system (especially if one ingests H2O2 also).

Hope this helps,

OYAGAMA

[Guest guest]

Hi,my name is Roy I live in Waterloo, Ontario, Canada. I am 47 and have had

p and pa for 18 years . At my worst I am totally unable to move from my head

down to my feet. This happens about once a year. Normally I am just in

constant pain through out my body. I do have good days but lately I can not

remember when. I do not know how my dear wife and family put up with me at

times. There is so much more I would like to do with them, but I am so tied

all the time. The pa has stolen so much time and energy from them. That is

the sad part of pa. I can deal with how it effects me, but I hate what it

has taken from my family no matter how hard I try.

Roy,

Robbie,

and :) :)

[Guest guest]

Mentally retarted children who have to be lead around my the hand!! These

children,which is exactly what they are, children , should be referred to as

special needs children,or exceptional children.I was sadden to see someone

on this list refer to them as mentally retarted.

Roy,

Robbie,

and :) :)

[Guest guest]

In a message dated 12/16/99 10:41:40 AM Eastern Standard Time,

dalemd@... writes:

<< Mentally retarted children who have to be lead around my the hand!! These

children,which is exactly what they are, children , should be referred to as

special needs children,or exceptional children.I was sadden to see someone

on this list refer to them as mentally retarted.

Roy,

Robbie,

and :) :)

>>

I also have a sister with severe mental and physical handicaps from birth and

I have fought that battle all my life. I grow cold when I hear the word

" retard " or " retarded " its as discriminating and hurtful as any other racial

slur you could use

[Guest guest]

>>>>>Mentally retarted children who have to be lead around my the

hand!! These

children,which is exactly what they are, children , should be

referred to as

special needs children,or exceptional children.I was sadden to

see someone

on this list refer to them as mentally retarted.

Roy,

Robbie,

and :) :) <<<<

Hello,

Being a mother of two special needs children (Down Syndrome) I

have to say that they are the ones leading us!! I think the

people who have to be led around by the hand are the ones who

have the highest levels of intelligence and no common sense!

Sometimes the doctors themselves!!

[Guest guest]

Dana, I'm new to the list as well. I have a 16 year old boy and I'm also a

single parent. I also have a 5 year old son. I understand what you're going

thru. I've tried to get Shaun to join the teen list, but he won't do it. He

doesn't want to talk about the OCD and gets upset with me if I try to discuss

what's going on at all. He wasn't able to go to school for about 4 weeks

before and after Christmas. He's back in school now, because of some

wonderful people at the school. His OCD seems to change often. Now I see

symptoms of contamination again. He stiffens up if I try to hug him and is

going thru clothes constantly. I could do 5 loads of laundry a day. if he

touches more than one towell, they all go in the wash. More than one shirt

in his closet, the same. I too have a very hard time distinguishing the OCD

from the " just being a teenager " . He sleeps all the time and won't ever help

me around the house unless I really get angry. I hate the way I feel so

angry all the time. There was a point that I didn't think I could cope. I

would cry all the time. It's so hard trying to be there for them all the

time, trying to help and understand, and also try to keep up a job and a

house. From what I've heard on this list so far, you'll get some great

advice from very knowledgable and caring people. Welcome to the list. Lemara

in Michigan.

[Guest guest]

Hi Lemara:

It is great that Shaun is back in school and has wonderful people helping

him. What you describe about interacting with him through shouting reminds

me a lot of how things were when we started learning how to live with OCD

in our family.

Has Shaun been checked for depression? I know teenagers have a reputation

for lolling around in bed a lot but this can also be a symptom of

depression, as is not responding or feeling overwhelmed by the normal

chores of family life.

Our son, Steve, has depression as well as OCD and I have gotten his

agreement that he needs to not stay in bed like a typical teen because it

is bad for his depression. I have explained to him how docs have even

treated depression with sleep deprivation. Of course, he still wants to

stay in bed but after a time I just encourage him to get up and do

something because his depression needs him to do this. Luckily his Paxil

really helps to control the depression, although I am rather sceptical

about whether it has ever really helped his OCD in a major way. Luckily

the CBT has really helped with the OCD.

Steve's dad and I have cried a lot. I think of tears as helping to wash

away some of the grief and pain. We also struggled and sometimes still do

to determine if something is OCD or if it is just ornery kid/teen behavior.

Eventually I learned that it is not important to determine this. All I

need to determine is whether the behavior is acceptable or not and then

respond accordingly. We were trained in a professional parenting plan by

Steve's doc and this helped us a lot. We targeted both OCD and non-OCD

behaviors for modification and found that this approach combined with the

CBT (including ERP) really improved the level of conflict experienced by

our family.

Steve is also a contamination OCD sufferer. There were loads and loads of

laundry. We have also had the time when only one t-shirt was wearable and

so there was almost no laundry (for him). This is a good target for CBT as

successful treatment of this will produce improvements both for Shaun and

for you with laundry detail.

I hope you are doing something to take care of yourself as you have so many

responsibilities and challenges. Take care, aloha, Kathy (H)

kathyh@...

At 09:30 PM 01/22/2000 EST, you wrote:

>From: LemaraMo@...

>

>Dana, I'm new to the list as well. I have a 16 year old boy and I'm also a

>single parent. I also have a 5 year old son. I understand what you're going

>thru. I've tried to get Shaun to join the teen list, but he won't do it. He

>doesn't want to talk about the OCD and gets upset with me if I try to

discuss

>what's going on at all. He wasn't able to go to school for about 4 weeks

>before and after Christmas. He's back in school now, because of some

>wonderful people at the school. His OCD seems to change often. Now I see

>symptoms of contamination again. He stiffens up if I try to hug him and is

>going thru clothes constantly. I could do 5 loads of laundry a day. if he

>touches more than one towell, they all go in the wash. More than one shirt

>in his closet, the same. I too have a very hard time distinguishing the OCD

>from the " just being a teenager " . He sleeps all the time and won't ever

help

>me around the house unless I really get angry. I hate the way I feel so

>angry all the time. There was a point that I didn't think I could cope. I

>would cry all the time. It's so hard trying to be there for them all the

>time, trying to help and understand, and also try to keep up a job and a

>house. From what I've heard on this list so far, you'll get some great

>advice from very knowledgable and caring people. Welcome to the list.

Lemara

>in Michigan.

[Guest guest]

Hi Lemara:

It is great that Shaun is back in school and has wonderful people helping

him. What you describe about interacting with him through shouting reminds

me a lot of how things were when we started learning how to live with OCD

in our family.

Has Shaun been checked for depression? I know teenagers have a reputation

for lolling around in bed a lot but this can also be a symptom of

depression, as is not responding or feeling overwhelmed by the normal

chores of family life.

Our son, Steve, has depression as well as OCD and I have gotten his

agreement that he needs to not stay in bed like a typical teen because it

is bad for his depression. I have explained to him how docs have even

treated depression with sleep deprivation. Of course, he still wants to

stay in bed but after a time I just encourage him to get up and do

something because his depression needs him to do this. Luckily his Paxil

really helps to control the depression, although I am rather sceptical

about whether it has ever really helped his OCD in a major way. Luckily

the CBT has really helped with the OCD.

Steve's dad and I have cried a lot. I think of tears as helping to wash

away some of the grief and pain. We also struggled and sometimes still do

to determine if something is OCD or if it is just ornery kid/teen behavior.

Eventually I learned that it is not important to determine this. All I

need to determine is whether the behavior is acceptable or not and then

respond accordingly. We were trained in a professional parenting plan by

Steve's doc and this helped us a lot. We targeted both OCD and non-OCD

behaviors for modification and found that this approach combined with the

CBT (including ERP) really improved the level of conflict experienced by

our family.

Steve is also a contamination OCD sufferer. There were loads and loads of

laundry. We have also had the time when only one t-shirt was wearable and

so there was almost no laundry (for him). This is a good target for CBT as

successful treatment of this will produce improvements both for Shaun and

for you with laundry detail.

I hope you are doing something to take care of yourself as you have so many

responsibilities and challenges. Take care, aloha, Kathy (H)

kathyh@...

At 09:30 PM 01/22/2000 EST, you wrote:

>From: LemaraMo@...

>

>Dana, I'm new to the list as well. I have a 16 year old boy and I'm also a

>single parent. I also have a 5 year old son. I understand what you're going

>thru. I've tried to get Shaun to join the teen list, but he won't do it. He

>doesn't want to talk about the OCD and gets upset with me if I try to

discuss

>what's going on at all. He wasn't able to go to school for about 4 weeks

>before and after Christmas. He's back in school now, because of some

>wonderful people at the school. His OCD seems to change often. Now I see

>symptoms of contamination again. He stiffens up if I try to hug him and is

>going thru clothes constantly. I could do 5 loads of laundry a day. if he

>touches more than one towell, they all go in the wash. More than one shirt

>in his closet, the same. I too have a very hard time distinguishing the OCD

>from the " just being a teenager " . He sleeps all the time and won't ever

help

>me around the house unless I really get angry. I hate the way I feel so

>angry all the time. There was a point that I didn't think I could cope. I

>would cry all the time. It's so hard trying to be there for them all the

>time, trying to help and understand, and also try to keep up a job and a

>house. From what I've heard on this list so far, you'll get some great

>advice from very knowledgable and caring people. Welcome to the list.

Lemara

>in Michigan.

[Guest guest]

> From: Kathy Hammes <kathyh@...>

> (snip)

> We also struggled and sometimes still do

> to determine if something is OCD or if it is just ornery kid/teen

behavior.

> Eventually I learned that it is not important to determine this. All I

> need to determine is whether the behavior is acceptable or not and then

> respond accordingly.

Kathy, I am still pretty vigilant about new behaviors, determining if they

are OCD or not. If they are, they are easier to address before they get

entrenched, it seems. Sometimes I'll notice her doing a new thing (one day

last week it was turning the pages of a book, smiling at each picture) and

it seems the new compulsion hadn't yet broken through to her awareness as

OCD-related. When I asked her about it though she seemed surprised, then

said yes it was a new OCD thing. We then looked through a couple of books

while she bossed back the smiling, this was really low-level for her, and

this new compulsion disappeared in a couple of days. Maybe it would have

vanished anyway, but I know her top-of-the-heirarchy, most difficult

compulsions are the ones that got started a year ago at onset and which grew

huge in the next several months before we began E & RP.

I think I understand, though, your advice relates more to not putting up

with objectionable behavior just because OCD may be involved and you can't

be certain. We haven't experienced much poor behavior with Kel but earlier

I had to take a similar stance when OCD was pushing Kel to do dangerous

things that I couldn't allow, OCD or no.

Kathy R. in Indiana

[Guest guest]

Hi Kathy:

I agree that it is important to address OCD symptoms before they get too

entrenched. Well done figuring out that Kel's smiling was an OCD behavior!

I envy your situation where OCD behaviors have not travelled along with

obnoxious and objectionable behavior. Do you think that is a matter of

relative age or just Kel has a sweet personality?

Take care, aloha, kathy (H)

kathyh@...

At 11:27 PM 01/22/2000 -0500, you wrote:

>From: " Kathy " <klr@...>

>

>

>

>> From: Kathy Hammes <kathyh@...>

>> (snip)

>> We also struggled and sometimes still do

>> to determine if something is OCD or if it is just ornery kid/teen

>behavior.

>> Eventually I learned that it is not important to determine this. All I

>> need to determine is whether the behavior is acceptable or not and then

>> respond accordingly.

>

>Kathy, I am still pretty vigilant about new behaviors, determining if they

>are OCD or not. If they are, they are easier to address before they get

>entrenched, it seems. Sometimes I'll notice her doing a new thing (one day

>last week it was turning the pages of a book, smiling at each picture) and

>it seems the new compulsion hadn't yet broken through to her awareness as

>OCD-related. When I asked her about it though she seemed surprised, then

>said yes it was a new OCD thing. We then looked through a couple of books

>while she bossed back the smiling, this was really low-level for her, and

>this new compulsion disappeared in a couple of days. Maybe it would have

>vanished anyway, but I know her top-of-the-heirarchy, most difficult

>compulsions are the ones that got started a year ago at onset and which grew

>huge in the next several months before we began E & RP.

>

>I think I understand, though, your advice relates more to not putting up

>with objectionable behavior just because OCD may be involved and you can't

>be certain. We haven't experienced much poor behavior with Kel but earlier

>I had to take a similar stance when OCD was pushing Kel to do dangerous

>things that I couldn't allow, OCD or no.

>

>Kathy R. in Indiana

[Guest guest]

<< I could do 5 loads of laundry a day. if he

touches more than one towell, they all go in the wash. More than one shirt

in his closet, the same. >>

Maybe Shaun should do his own laundry? This is a good idea which Mat's new

therapist gave me.

Mat's situation is entirely opposite and is more of an ADHD, not paying

attention, and carelessly wiping his mouth on his shirt kind of thing. The

therapist suggested having him change his shirt right away and making him

responsible for his own laundry. I really like this idea. It is an

excellent use of logical consequences.

Patti in Ca.

[Guest guest]

> From: Kathy Hammes <kathyh@...>

> I envy your situation where OCD behaviors have not travelled along with

> obnoxious and objectionable behavior. Do you think that is a matter of

> relative age or just Kel has a sweet personality?

Hi Kathy, Kel was always sweet-tempered, no " terrible twos " -type behavior.

She was quite a talker from a young age and I thought because she could

express herself maybe this explained the lack of tantruming, etc. These

days she tends to express her frustrations and anger with tears and fussy

behavior, wants to be held and comforted, but so far nothing obnoxious or

objectionable. She just seems an overwhelmed, overtired small kid at these

times. I'm sure it is due to her age (6 this month) and I promise not to be

surprised when her " style " of expressing the frustrations of living with OCD

change . . .

Kathy R. in Indiana

[Guest guest]

Hi Kathy:

I am sure that Kel will be able to use her CBT techniques to make sure that

she can behave unobjectionably as she grows older in spite of her OCD.

Steve was also a sweet little thing, very good at independently

entertaining himself, very social - we were completely blown away that he

was suffering from anxiety. He could get a bit determined about things but

basically enjoyed life until OCD started to overtake him.

Take care, aloha, Kathy (H)

kathyh@...

At 11:30 PM 01/23/2000 -0500, you wrote:

>From: " Kathy " <klr@...>

>

>

>

>> From: Kathy Hammes <kathyh@...>

>> I envy your situation where OCD behaviors have not travelled along with

>> obnoxious and objectionable behavior. Do you think that is a matter of

>> relative age or just Kel has a sweet personality?

>

>Hi Kathy, Kel was always sweet-tempered, no " terrible twos " -type behavior.

>She was quite a talker from a young age and I thought because she could

>express herself maybe this explained the lack of tantruming, etc. These

>days she tends to express her frustrations and anger with tears and fussy

>behavior, wants to be held and comforted, but so far nothing obnoxious or

>objectionable. She just seems an overwhelmed, overtired small kid at these

>times. I'm sure it is due to her age (6 this month) and I promise not to be

>surprised when her " style " of expressing the frustrations of living with OCD

>change . . .

>

>Kathy R. in Indiana

[Guest guest]

HI Kathy R.,

You wrote:

>

> Kel was always sweet-tempered, no " terrible twos " -type behavior.

> She was quite a talker from a young age and I thought because she could

> express herself maybe this explained the lack of tantruming, etc. These

> days she tends to express her frustrations and anger with tears and fussy

> behavior, wants to be held and comforted, but so far nothing obnoxious ...

Your Kel must have a sweet temper! andra was very verbal from an

early age, too, but she could rage away with the best of them!

She rarely rages anymore but when OCD is bothering her, she can make it

very unpleasant for anyone in her immediate vicinity. She'll go into a

dark mood complete with persistent, loud whining and verbalizing a long

list of grievances, aches and pains.

When will Kel turn six? I think age six is a time when girls start to

be a little harder on themselves and put more pressure on themselves to

be like their peers. Sometimes this is good (it helped andra

learned to ride a bike, do monkey bars, etc.) but sometimes it's not so

good.

I think a sweet temperament, coupled with the ability to verbally

express her needs, will serve Kel well in life.

Take care,

Lesli (S.F. Bay)

[Guest guest]

> From: Masoud & Lesli Molaei <desk@...>

>

> She rarely rages anymore but when OCD is bothering her, she can make it

> very unpleasant for anyone in her immediate vicinity. She'll go into a

> dark mood complete with persistent, loud whining and verbalizing a long

> list of grievances, aches and pains.

When this happens, do you point out that it seems OCD is giving her problems

and when a person is having problems (for any reason) a lot of things can

bother that wouldn't otherwise? I've noticed my daughter can get pretty far

into frustration without recognizing what is happening. (My husband does

this too.) Calling it what it is helps her break out of the mood, then we

go through the list of hungry, angry, lonely (bored for my daughter),

tired--one of these things is almost always out of whack! I'm always trying

to find ways to help her realize she's in charge, and that she can do things

to help herself feel better.

> When will Kel turn six? I think age six is a time when girls start to

> be a little harder on themselves and put more pressure on themselves to

> be like their peers. Sometimes this is good (it helped andra

> learned to ride a bike, do monkey bars, etc.) but sometimes it's not so

> good.

Kel's birthday was this month, and yes! I have really noticed this change

lately. The worries about fatness, wanting Sketcher brand shoes, etc., also

recently Kel has said she doesn't like being different that the other girls,

and that she doesn't like being a " weird " (OCD) kid. She's become

embarassed about having this disorder, I think the days of announcing that

she has OCD to friends and others are coming to an end, for better or worse.

> I think a sweet temperament, coupled with the ability to verbally

> express her needs, will serve Kel well in life.

Hope so :-)

Kathy R. in Indiana

[Guest guest]

In a message dated 7/17/2000 7:53:06 PM Pacific Daylight Time,

cat926@... writes:

<< The thing I do now is walk slowly and look at my feet.....oh and

tell everyone else to get their own darn donuts!! LOL!

>>

Hahaha thats what I do !!! Hey you want something its over there.

[Guest guest]

Hi, Gang ...

I just had a funny thought ... Suppose you were at a CMT convention and

everyone was lying on the floor to play it safe. )

[Guest guest]

In a message dated 7/17/2000 10:28:25 PM Pacific Daylight Time,

oregonpapa@... writes:

<< Hi, Gang ...

I just had a funny thought ... Suppose you were at a CMT convention and

everyone was lying on the floor to play it safe. )

>>

LOL To funny !

[Guest guest]

Hey Lamar

Its good to know your out there and that we can get some info from you.

I am sre you can be of great help to all of us. Sorry for all your

misfortune you have had to deal with but remember " what goes around will

come around " ....that Gal will eventually get what she deserves and it

sounds to me like if it ever catches up with her may be jail time. Take

care and don't give up on Women we are not all bad or goldiggers right

Ladies?

Huggs