Beth

[Guest guest]

Dear Beth,

As another lupus person here, I have been following your progress

especially, and am so sorry that interferon didn't help. The minicycline

sounds like a good move, as it has helped other lupus patients and those

with underlying bacterial infection - according to Arthritis Foundation. I

still want to try interferon, but am hesitating due to other disturbing

signs I'm experiencing. Please stay posted about your progress!

Take care,

Christie

tab@...

>Beth,

> I got quite choked up reading your post re:stopping the interferon. I'm

>sorry that it didn't work out. I've been following your posts 'pulling' for

>you! All I can say is that this whole mess that we're all in SUCKS...but at

>least we all have one another. So, until we ALL 'get there'

>{{{{{{{HUGS}}}}}}}}

>Ann

[Guest guest]

Way to go Beth!!

Sounds like you have been busy the last few weeks - and so has e! New

shoes and socks - maybe this is a turning point for her?

I'm relieved to read that is feeling better. Sometimes we need to stop

and take a break before making major changes. Send him regards. You cant

be everywhere, and I guess your dad is lower on your priority list these

days - maybe you can find someone else who can go in and lend a hand.

There are CO-OPs here that you can exchange services such as meals for

lawnmowing. Perhaps this would work for you?

>I told her today she need to get into therapy.<

GOOD FOR YOU!! You have enough on your own plate, dont take on any more!!

You keep up your good work - your doing great!

Thank you for saying I'm a good mom, I'll remind the kids the next time they

roll their eyes and give me that " you dont know anything " look!

hugs to you, wendy, in canada

wb4@...

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[Guest guest]

HI ,I sure hope things work out for Tom.You're so strong ,and

such a good mother.e is doing fine and doing fine wearing new

clothes.She wore gold sparkle shoes to school today,1/2 sizies to big,but

she had socks on.I hope she kept them on.I'm sure by now that most mothers

think that I'm crazy anyway.Oh well maybe I am.Funny how ocd changes your

thinking about what is important. is doing much better in his job.My

dad has me so busy,he really needs more help than I'm able to give.Thanks

for the name of the book.I told her today she need to get into therapy. Love

Beth

beth

> From: " W. Birkhan " <wb4@...>

>

> Beth in IN,

>

> The first book that comes to mind is Herb Gravitz's: OCD, New Help for

the

> Family. It will simply explain to him how to cope - I hope that you

> suggested to this woman to get into therapy if she isnt already!

> Careful not to fall into a trap of being a sounding board for her

reasurance

> seeking behaviour!

>

> And - how is e, eh? *w*

>

> wendy, in canada

> ( I think I need to get a map of the States!)

>

> ______________________________________________________

> Get Your Private, Free Email at http://www.hotmail.com

>

>

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

[Guest guest]

Hi beth,

I have been in treatment for one year...a mighty short time considering

that I've had Lyme for over 15 yrs...

Take Care,

Joan LI NY

[Guest guest]

I don't think we've heard from you in a while, and this is great news, it

must be such a relief to you-- Jeans before undies? We haven't had many

clothing issues, but jeans are absolutely on our 'only if forced to, like I

have to walk thru poison ivy, and thats the only thing that will protect me'

list.

I feel the same way after I've put on 10 pounds, so I have sympathy.

Huge steps, hope you are both proud of yourselves!

Ellen/NY

[Guest guest]

Hi Beth, thanks for letting us know how well e continues to do with wearing clothes. What a wonderful thing for you both! Has school started yet? How is she doing with that?

You are right of course, OCD does have a way of throwing new things at us . . . but now e has OCD on the run with underwear and she knows she can stand up to OCD, not do everything it says. If fires and fire drills are at the top of e's heirarchy, can you break this down into smaller goals? Can she participate in a fire drill when she knows it is planned (no real fire)? Can you burn a candle, buy a box of matches, visit the local fire station, set off your smoke alarms at home (when she knows it's going to happen, to begin with?) You get the idea, find a fire-related thing that, though it may make e anxious, she thinks she can do. Praise, praise, praise and build from her first success. Let us know how things are going :-)

Kathy R. in Indiana

[Guest guest]

Hi Kathy, e has been in school a week now . She is doing OK ,but is so afraid that the fire alarm will go off that she has cried a few times. How do I help her with the thoughts in her head? She tells me she can hear the beeps in her head.This is mostly at night.We were going to set the fire alarm off today,but she wasn't ready. Love Beth

Re: Beth

Hi Beth, thanks for letting us know how well e continues to do with wearing clothes. What a wonderful thing for you both! Has school started yet? How is she doing with that?

You are right of course, OCD does have a way of throwing new things at us . . . but now e has OCD on the run with underwear and she knows she can stand up to OCD, not do everything it says. If fires and fire drills are at the top of e's heirarchy, can you break this down into smaller goals? Can she participate in a fire drill when she knows it is planned (no real fire)? Can you burn a candle, buy a box of matches, visit the local fire station, set off your smoke alarms at home (when she knows it's going to happen, to begin with?) You get the idea, find a fire-related thing that, though it may make e anxious, she thinks she can do. Praise, praise, praise and build from her first success. Let us know how things are going :-)

Kathy R. in Indiana

You may subscribe to the OCD-L by emailing listserv@... . In the body of your message write: subscribe OCD-L your name. You may subscribe to the Parents of Adults with OCD List at parentsofadultswithOCD . You may access the files, links, and archives for our list at http://www.egoups.com/group/ . Subscription issues, problems, or suggestions may be addressed to Louis Harkins, list owner, at harkins@... .

[Guest guest]

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

From: Wayt

Hi Kathy, e has been in school a week now . She is doing OK ,but is so afraid that the fire alarm will go off that she has cried a few times. How do I help her with the thoughts in her head? She tells me she can hear the beeps in her head.This is mostly at night.We were going to set the fire alarm off today,but she wasn't ready. Love Beth

Hi Beth, is the the sudden loud noise of an alarm, the thought of a fire, or both that are bothering e? For Kel last year it was both. In Kindergarten the teacher would tell the class when a fire drill was scheduled (she phased this out toward the end of the year) but once the alarm went off unexpectedly and Kel startled so violently she pushed over a bookcase.

Perhaps her teacher would exempt e from fire drills for awhile, or warn her when they are about to occur, while she works to get this fear under control. Nighttime/bedtime continues to be the hardest time for Kellen too with intrusive and frightening thoughts. It sometimes helps to remind Kellen that thoughts are just that--thoughts--and though they are unpleasant they can't hurt her. Help her refocus on something else--a good book, soft soothing music, a fun thing planned for the next day. Kel has been recently playing around with imagining a dial on her belly to "turn down" bothering thoughts and fear feelings and this seems worth a try.

I know when your child is crying it's hard to stay calm and matter-of-fact but this is helpful to Kellen. I say something like "Oh is OCD *still* trying to scare you with that same old fire thought? I guess he hasn't caught on yet that you're not listening very much to him these days! I wonder what's happening in "The Secret Garden" (or whatever book you two are reading) tonight?" Over time this sort of approach has worked to bring down the intensity level of all of her scary thoughts.

No one enjoys sudden loud noises but we can acclimate to them. For this we used alarm clocks, kitchen timers, the vacuum cleaner, the garbage disposal and the smoke alarms, first when Kel knew the sound was coming, and later (with her agreement) when it would be a surprise. We would listen for one minute, then two, then five in a stepwise fashion until Kel stopped dreading the adrenaline rush they provoked.

For fire fear itself we burned candles, cooked on the gas stove, roasted marshmallows on the grill, and visited the fire station. I found an activity that Kel thought she could do (roasting marshmallows was good, it has a built-in reward!) and went from there. Even talking about these sort of things is imaginal exposure and helpful. If setting off your home fire alarms is too far up the scale for e, ask her what she thinks she *could* do. Maybe an alarm clock ringing, a small candle burning on the kitchen table, a book with pictures of fire? All these things will probably make e at least uncomfortable but I bet you two can find a starting place. Remind e that this is how she gets OCD small and to leave her alone.

Finally, Kel is beginning her fourth week of school, and by last week her OCD and anxiety had finally settled back down to its before-school level. She was worked up for a solid two weeks--and all aspects of OCD were more intense then, especially the bedtime thoughts. You may find e's fire and alarm fears fading somewhat in the next week or so as she settles into the school routine.

Good luck to you Beth!

Kathy R. in Indiana

[Guest guest]

Thank you ,I always pray with e before school,but I really like your pray.Love Beth

RE: Re: Beth

Beth,

My daughter was scared of fire alarms last year. We spoke to her teacher and they gave her a job to do for the scheduled and not scheduled fire alarms. She held the attendance book (a very important job). This helped her in knowing she had to do a job it took some of the fear away from the noise and the 1000 kids exiting at once! I stared a new mantra/prayer with her before school. We say "Today I will Love and Let My Fears Go."

Good Luck,

in PA

-----Original Message-----From: Kathy [mailto:klr@...]Sent: Tuesday, September 05, 2000 3:55 PMegroupsSubject: Re: Re: Beth

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

From: Wayt

You may subscribe to the OCD-L by emailing listserv@... . In the body of your message write: subscribe OCD-L your name. You may subscribe to the Parents of Adults with OCD List at parentsofadultswithOCD . You may access the files, links, and archives for our list at http://www.egoups.com/group/ . Subscription issues, problems, or suggestions may be addressed to Louis Harkins, list owner, at harkins@... . You may subscribe to the OCD-L by emailing listserv@... . In the body of your message write: subscribe OCD-L your name. You may subscribe to the Parents of Adults with OCD List at parentsofadultswithOCD . You may access the files, links, and archives for our list at http://www.egoups.com/group/ . Subscription issues, problems, or suggestions may be addressed to Louis Harkins, list owner, at harkins@... .

[Guest guest]

Beth,

My daughter was scared of fire alarms last year. We spoke to her teacher and they gave her a job to do for the scheduled and not scheduled fire alarms. She held the attendance book (a very important job). This helped her in knowing she had to do a job it took some of the fear away from the noise and the 1000 kids exiting at once! I stared a new mantra/prayer with her before school. We say "Today I will Love and Let My Fears Go."

Good Luck,

in PA

-----Original Message-----From: Kathy [mailto:klr@...]Sent: Tuesday, September 05, 2000 3:55 PMegroupsSubject: Re: Re: Beth

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

From: Wayt

You may subscribe to the OCD-L by emailing listserv@... . In the body of your message write: subscribe OCD-L your name. You may subscribe to the Parents of Adults with OCD List at parentsofadultswithOCD . You may access the files, links, and archives for our list at http://www.egoups.com/group/ . Subscription issues, problems, or suggestions may be addressed to Louis Harkins, list owner, at harkins@... .

[Guest guest]

Hi Beth, welcome to the group even though I wished you didn't have AIH. My

daughter Jodi (27) is the one who has AIH and no she is not on SS as of yet.

She is still able to work a full time job and was diagnosed in Feb. Everyone

in the group will try to help as much as possible and don't think any

question is to dumb. We are all still learning and praying for a cure. Take

care and do what the doctors tell you. Watch your diet, esp. salt intake,

stay away from red meat and alcohol. Most important take your medication

when you are supposed to. Genny/Jodi's Mom/Florida

[Guest guest]

Hi Beth,

Welcome I am also pretty new a couple of weeks. I do not received social

security/disability. I am 30. I was diagnosed in Nov 98. Please feel free

to ask anything.

AMY

[Guest guest]

I also too take actigall can you tell me if it makes you have different

colored bowel

movements? and when you have the urge to go you have to GO! I just want to

know if everyone has this from the actigall or just me. I would appreciate

any answers you

might be able to give me. Thank you,

I am sorry if anyone finds this offensive but I need to know this

info!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Guest guest]

In a message dated 10/27/2000 12:20:27 AM Eastern Daylight Time,

mhe3053904@... writes:

<<

I am sorry if anyone finds this offensive but I need to know this

info!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! >>

Hi ,

Please don't appolige for asking about bowel movements. That is part of this

Dragon we all have. Every thing in our lives no matter how big or small is

very important to each of us. As a family here on our support list, it is

important to all of us.

I have taken Actigall for almost a year now..the only thing it did to me was

cause constipation. I take Fenugeek and a stool softner. I know others have

had the different colored stools, but I don't remember what medications they

were on. Brain Fog...old age....or poor memory LOL...

Love ya'll, have a great day, remember to laugh all day. Laughter is music to

the heart and very healing. Soooooo, laugh a lot, love a lot, and be healthy,

especially love a lot, the more love you give the more you get in return.....

Joan, List Moderator

Florida

AIH, 1 Gall Stone, HBP

Fox

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(aol only)

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[Guest guest]

Hi Beth, how are you today? Jodi was doing OK but last couple of labs have

not been very good and I had her in the ER Monday night with terrible

abdominal pain. The ER doctor was on the phone with her Gastro Dr. many

times. He found she has a kidney infection and also gastro.....itis don't

know why to spell it. She didn't have to spend the night but had to see

Gastro. next morning. He gave her med. to help her stomach so she can keep

food down. She takes 22 pills a day and as you will find out your stomach

pays big time. She has the pictures of her endoscopy and it looks

awful...........Yes, she has a little boy (Colton) that's two and a half.

They waited six years before having a child and thank God they had him when

they did. Her Hepatologist in Miami told her what ever she did not to get

preg. With her platelets being so low she would bleed to death. Beth if I

were you and wanted more children I would talk to the doctor about having

them as soon as possible. Please understand, I'm not trying to scare you but

in Jodi's case we know things are going to get a lot worse before they get

better. We know she has cirrhosis and her Hepatologist said it's only a

matter of time before he will put her on the transplant list. We go back to

see him Nov. 20, which is a four hour drive for us. Even though it's hard,

keep a positive attitude, that goes a long way in helping your health. Also

pray the research they are doing will have a breakthrough..........Hug that

baby of yours for me. Take care and God bless. Write anytime about

anything. Genny/Jodi's Mom/Florida

[Guest guest]

Beth,

Sorry, I forgot. I am a RN but now I am a stay at home mom! I stopped work

when I was diagnosed and have been home since. I only just graduated and

then never really worked but for a short time.

AMY

[Guest guest]

Hi,

Why do you take fenugreek?

Shireen

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>Subject: Re: [ ] Beth

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>In a message dated 10/27/2000 12:20:27 AM Eastern Daylight Time,

>mhe3053904@... writes:

>

><<

> I am sorry if anyone finds this offensive but I need to know this

> info!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! >>

>

>Hi ,

>Please don't appolige for asking about bowel movements. That is part of

>this

>Dragon we all have. Every thing in our lives no matter how big or small is

>very important to each of us. As a family here on our support list, it is

>important to all of us.

>

>I have taken Actigall for almost a year now..the only thing it did to me

>was

>cause constipation. I take Fenugeek and a stool softner. I know others

>have

>had the different colored stools, but I don't remember what medications

>they

>were on. Brain Fog...old age....or poor memory LOL...

>

>Love ya'll, have a great day, remember to laugh all day. Laughter is music

>to

>the heart and very healing. Soooooo, laugh a lot, love a lot, and be

>healthy,

>especially love a lot, the more love you give the more you get in

>return.....

>

>

>Joan, List Moderator

>Florida

>AIH, 1 Gall Stone, HBP

>

>Fox

><A HREF= " aol://1722:http://www.foxdianasden.com " >Fox 's Den</A> (aol

>only)

><A HREF= " http://www.foxdianasden.com " >http://www.foxdianasden.com</A>

>

>Foxy's Health

><A HREF= " http://www.foxdianasden.com/health.com " >Foxy's Health</A> (aol

>only)

><A HREF= " http://www.foxdianasden.com/health.com " >

>http://www.foxdianasden.com/health.htm</A>

>

>Liver Support

><A HREF= " http://www.foxdianasden.com/liver support.htm " >Liver Support</A>

>(aol only)

><A HREF= " http://www.foxdianasden.com/liver support.htm " >

>http://www.foxdianasden.com/liver support.htm</A>

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[Guest guest]

Beth,

Sorry to take so long to write back. The herbs that I take are: Milk

Thistle, Dandelion (for AIH), SAMe (for fibromyalgia), chromium picolinate

(for diabetes), vit E, vit C, mutlitvitamin. The precription med that I take

are: Imuran (AIH), Lodine (fibromyalgia), prevacid (reflux). I take

melatonin to help me sleep. And occasionally

I will take a Darvocet for pain (fibromyalgia) but only when it is unbearable

(about once a month). I also have a CPAP machine for sleep apnea that I got

about a month ago. Getting good quality sleep has made a big difference in

the quality of my days. I just got a magnetic mattress also.

I find that the fibromyalgia causes me more problems than the AIH. In fact

I am beginning to feel that the AIH doesn't really cause me any problems. Of

course it is hard to tell if the fatigue that I experience is from AIH or

from fibromyalgia.

I am looking into taking other herbs, as I would like to feel totally

healthy

Jo from N. CA

[Guest guest]

Hi Beth, hope this finds you feeling better. Jodi is 27 yrs. old and was

diagnosed in Feb. with AIH and Cirrhosis in April. She works full time for a

pediatric dentist. She loves her work and just said night before last she

didn't know what she would do if or when she can't do it anymore. She has

been in the hospital twice since Feb. and has to take off to go to Miami to

see her Hepatologist. She is now being seen by him every 3 months. At first

it was every six weeks and it is a four hour drive one way for us. Thank God

she isn't catching everything that comes around. Before we found out she has

AIH it seemed like she was sick with something all the time. So the meds

most be doing their job. She loves Colt very much but isn't the stay at home

type. I have always had to work so don't know what it would be like to stay

home.......Better go for now but will talk to you soon. Hang in there and

take care. God bless, Genny/Jodi's Mom

[Guest guest]

Genny,

Staying at home isn't for everyone, that's for sure! For the most part, I

enjoy working out of my home, but I have my days... C.J., who's 19 months

old, can get it to so much...he's so curious. I feel like I spend more time

telling him no and redirecting him and picking up after him than I do

working!

I'm glad Jodi is still able to work. I hope her work is understanding of

the time she has to take off here and there.

I hope you are all doing well,

Beth, AIH 10/00, MI

Re: [ ] Beth

> Hi Beth, hope this finds you feeling better. Jodi is 27 yrs. old and was

> diagnosed in Feb. with AIH and Cirrhosis in April. She works full time

for a

> pediatric dentist. She loves her work and just said night before last she

> didn't know what she would do if or when she can't do it anymore. She has

> been in the hospital twice since Feb. and has to take off to go to Miami

to

> see her Hepatologist. She is now being seen by him every 3 months. At

first

> it was every six weeks and it is a four hour drive one way for us. Thank

God

> she isn't catching everything that comes around. Before we found out she

has

> AIH it seemed like she was sick with something all the time. So the meds

> most be doing their job. She loves Colt very much but isn't the stay at

home

> type. I have always had to work so don't know what it would be like to

stay

> home.......Better go for now but will talk to you soon. Hang in there and

> take care. God bless, Genny/Jodi's Mom

>

>

>

[Guest guest]

Beth - can you please tell me what the dandelion is suppose to do? Thanks,

Hug's,

[Guest guest]

Hi Beth,

I am a 63 old female that was told 10 years ago after much testing that I had

gramulomous Liver disease and they knew nothing about it so there was nothing

to do for it. Well, I went on with my life feeling good some days and

feeling bad. So oh well life goes on...........I kept gaining weight and got

up to 262 lbs and started having all kinds of problems. I asked my Dr. to

help me because I just couldn't support all this weight. so to make a long

story short I went on a fasting diet called Living Lite and using a product

called HMR I lost 70 lbs. in 120 days and then it started again pain in the

right side blood work showed liver counts going up. They did a CTScan and

saw the liver was enlarged and also the spleen and the portal vessels fromthe

Liver. Sent me back to the Gastrol Dr. I had seen 10 years before and he did

a test called ANA and said we needed to talk..........This will take place on

Nov. 8th. I went on the Internet to look up this problem............I just

wanted to talk to you because you had something that sounded like what I

have...........Is there anything to worry about? I don't think there is

anything that can be done so maybe not knowing is better we all have to go

sometimes..............Hummmmmmmm..........What next.

Joan

[Guest guest]

Hi Beth, thanks for the kind words. I don't know how long Jodi will be able

to work full time but as you will find out the meds can get very expensive.

She takes 22 pills a day and even with good insurance it still adds up. Dr.

, her boss is understanding most of the time. The only thing that

really burned me up is he based their bonus on the number of days they were

out. The others girls take off just because it's that time of the month or a

headache. She works with a lot more pain than that every day. He tells them

they should work as a team, well my doctor pays us the same bonus because we

are a team. She has been there longer than any of the other 12 girls he has

so I don't think he wants to lose her. Hope you are having a good week.

Better go for now, have a lot of mail to go through. God bless, Genny/Jodi's

Mom

[Guest guest]

Hi Beth, my first question is do you have a Gastroenterolgist? If so is he

or she the one who referred you to your present Hepatologist? If you are not

happy with this doctor, yes please find another but not from the yellow

pages. When Jodi was diagnosed by her Gastroenterolgist and Oncologist they

are the ones who gave her Dr. Reidy's name at the University of Miami, saying

he is one of the best in the country. I would think that if you have a

Gastroenterolgist or Oncologist they would have done the same. If not then

I'm sure that someone in the group will be able to give you some names. I

hope you can find one that has the time to give you the answers you need.

Take care and God bless, Genny/Jodi's Mom

[Guest guest]

Beth, until you find someone you feel more comfortable with ask the doctors

you have how many AIH cases they have had. The problem may be lack of

experience. Just a thought, Genny/Jodi's Mom