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Re: Digest Number 456

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Gayle,

Every time I read your posts, I feel like I am listening to myself. There are

so many parallels it is almost scary. I think that you may just be my 'soul

sister.'

I sit at this computer twice a day when I can and read all of the posts. It

has helped to get my brain to start working again. I felt like I was

in a fog for so long and could not find my way out. This computer has been a

life saver for me.

Hope that you are feeling good today.

Bless you, Ginger AIH

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Geri,

I am behind on my mail because of doctor and other appointments. I just want

to say that your letter to Mike surely sums up a lot about this disease. Your

knowledge and experience is vast and I learn something from you almost daily.

Thank you for your 'sharing.'

Ginger AIH

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In a message dated 11/19/1999 8:33:57 PM Eastern Standard Time,

majuli@... writes:

<<

I am pretty much convinced to heed the wisdom found herein and not quit

altogether until I am either back in town or can have a cortisone

insufficiency test. I'm sure you can identify with this Geri: I don't want

to celebrate the normal labs by feeling sick! Oh, this two-edged sword we

all share.

>>

Kay,

I think that is what I would do. What difference is a week more on pred

gonna make? You deserve a really nice vacation away from work and the

aloneness, and I'm afraid that if you went completely off Pred that you would

spend the week worrying if you were gonna get sick. You aren't allowed to

take any stress with you on your vacation!

Hugs,

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Barbara, thanks for your post. I feel so much better now. It was silly of

me to worry, but when my hepatologist brought up the possibility....I

overreacted. Thanks, I am climbing above the depression; it is a fight.

I started prednisone in June 1995, so it's been almost 4-1/2 years. I have

been on 5mg for maybe a year, I'm not sure. I reduced it to 2.5mg on

Wednesday and am supposed to stop altogether next Wednesday.

Based on what you say, it appears I should have no problems at all because

my adrenal glands are producing enough to make up for it and I have been

below 10mg long enough for them to kick in. (Ooo, but what if my body needs

15 mg not to feel bad - adrenals 10 and pills 5! -but there I go again!)

On the other hand! Geri, your post about possible atrophy of the adrenal

glands certainly stopped me short in my tracks. (I wish someone would

define " long-term " steroid use in years.) I like the suggestion for

prevention: " avoid long-term steroid use " ! OK, will do! Well, I don't

have time for a cortisone insufficiency test before I am supposed to

discontinue altogether and leave town.

I am pretty much convinced to heed the wisdom found herein and not quit

altogether until I am either back in town or can have a cortisone

insufficiency test. I'm sure you can identify with this Geri: I don't want

to celebrate the normal labs by feeling sick! Oh, this two-edged sword we

all share.

Thanks everyone for sharing your experience and knowledge and just plain

heartfelt opinions. You are the experts.

Take care all,

Kay

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Sue, thanks for telling me that! Maybe I WILL take a chance!

Kay AIH/PBC Austin

> When I was taken off the prednisone last year, I took the last one the

first > day I was in Las Vegas and didn't get sick until a month later. >

Sue AIH

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Mike wrote:

Is there anywhere to get injectable hydroxy w/o a

script?Mike

Martha answer's: The latest issue of the CFIDS

Chronicle has a several page article on the use on

injectable B-12. Also, Carol has posted Cheney's

protocol on B-12. Look it up at

www.virtualhometown.com/dfwcfids. Take this info to

your doctor, ask him for the prescription. Have it

sent to/ or your doc call it in: Pharmacy on the Park

in Charlotte, NC:

1-800-654-3115. This is a pharmacy Cheney uses.

Martha

__________________________________________________

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  • 3 months later...

In defense of our moderator(s) who are doing such an admirable job of

producing this list, the suggestion was to tone down the number of

" personals " , not eliminate them altogether. If you have saved old posts

go back and look at the past month or so, it did get out of hand and the

moderators were doing their job by suggesting that these personal posts

be limited somewhat. I did not remember any specific writers mentioned

as being at fault and if any of you feel that one (or a few) writers are

being singled out, is it possible that they were, in fact, getting out of

hand with their posts? By all means a joke here, a personal anecdote

there is necessary and welcome but things are not black and white. We

need a viable mix of information and personal items to meet everyone's

needs. I would like to hear from the moderators as I do not believe

their intent was to make this a sterile web site.

Barry

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I also miss Gillian! I believe that humor is good therapy and I think

we all need that as much as we need our meds. My husband said that the

only time he has heard me have a good laugh in the last year was when

reading Gillian's posts. By the way Gillian if you are still on

here....he has a nice hairy chest!

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  • 8 months later...
  • 3 months later...

Hello,

Mark raised several points, many of which are good. I just waned to clarify

what an EO is, and its role in the ABCs of contingent relationships.

EO stands for " establishing operations " , which many then translate loosely

as " motivation " . Sometimes, it the term EO is confounded with

reinforcement. I think this can be somewhat misleading.

An EO *precedes* the target behavior. For example, you and your child are

headed to the playground. When you're almost there, you get to a gate. The

gate for you is an EO to open the gate. However, for your child at that

same time, *his inability to open the gate* is an EO for him/her to request

" help " (or " open " or even just eye contact). At this moment, you must be

very clear in your head what " target behavior " you want to increase, so that

you can prompt for it.

Once your child has said " help " (or " open " or just plain ol' eye contact),

you then open the gate. Opening the gate has become the reinforcer for the

target behavior of " open " (etc).

When dealing with this subject, I often hear that " it's all in the

reinforcer, baby " : )

I often ask myself, isn't it all in the EO? After all, that's what

" motivates " the child to generate a behavior (whether it's on target or

not). How we reinforce the behavior that occurs will determine if the

tendency toward that behavior will increase or decrease (depending on

whether or not that behavior has been reinforced or " punished " ).

If someone else wants to chime in here, it would be nice to have a

discussion on this topic.

Best,

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wrote:

>

>An EO *precedes* the target behavior. For example, you and your child are

>headed to the playground. When you're almost there, you get to a gate. The

>gate for you is an EO to open the gate. However, for your child at that

>same time, *his inability to open the gate* is an EO for him/her to request

> " help " (or " open " or even just eye contact). At this moment, you must be

>very clear in your head what " target behavior " you want to increase, so that

>you can prompt for it.

This is where people get lost sometimes I think, and why I wrote in a post

to Mark, where people have a hard time sometimes because you need to be

fast on your feet, recognizing the EO for what is is, responding and

knowing it can be lost rather quickly, if the response required is too hard

for a child.

Sometimes that eye contact, or a point might be what you should require

unless you know darn well, the kid can say " open " or " gate " or " help. "

Because, it is easier to keep a kid responsive and interested in reciprocal

responses, if some are very simple and do not demand too much. That's when

you kill your reinforcer as we say... ;-)

>Once your child has said " help " (or " open " or just plain ol' eye contact),

>you then open the gate. Opening the gate has become the reinforcer for the

>target behavior of " open " (etc).

>When dealing with this subject, I often hear that " it's all in the

>reinforcer, baby " : )

Ahh, this is why I sometimes say, probably to other people's annoyance it's

not entirely about reinforcers and some times, it is indeed about the task

or the environment or the EO. The fact is sometimes, nothing we have works

for some tasks, because the task itself is " punishing " and this might be

for any number of reasons, past associations with failure, not enough easy

interspersed with the hard, people pushing good work and not knowing when

to quit, inconsistency and all kinds of stuff might make the best french

fry in the world become loathsome. It's really not the fry, but the

motivation itself is null and void, generally because of history, not the

present situation. It's hard to convince somebody who has been stung, the

bee is safe.

>I often ask myself, isn't it all in the EO? After all, that's what

> " motivates " the child to generate a behavior (whether it's on target or

>not). How we reinforce the behavior that occurs will determine if the

>tendency toward that behavior will increase or decrease (depending on

>whether or not that behavior has been reinforced or " punished " ).

>

>If someone else wants to chime in here, it would be nice to have a

>discussion on this topic.

>Best,

>

>

Well, I am just interested in general.

We spend a lot of time creating and invividualizing material. Due to Ize's

age and needs, but also interests, we have a rather oddly balanced program

I suppose. It's hard to work on certain self help skills and other similar

areas, because Isaac finds it utterly uncomprehensible anyone should care

about folded items or anything like that, to the point he has been known to

say, NO to ice cream and any number of things when we try to get him to

learn some of these skills. The problem is out of context it is incredibly

boring and in context it is incredibly boring. LOL

No wonder I am not really into house cleaning. We've gotten some matching

and putting away silverware, because he already knows the concept, though

he sighs deeply, so does my no label kid when she has to empty the

dishwasher or put away silverware. Some of these things he is attending to

and enjoying learning now, trying to use the electric can opener has become

motivating. One very, very shortly gets some soup! And he likes to press

the buttons we ask him to press on the microwave, but why not, you get your

food warmed up.

I think as far as EO, reinforcers and certain tasks go, I would be better

off finding a maid!

Jennie, in the market for an ABA maid.

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  • 3 weeks later...
Guest guest

In a message dated 03/10/2001 3:11:52 AM Central Standard Time,

writes:

> Re: Emu Oil Blues

Finally!! A response I can live with!! Actually, Simon, that is what I did,

except I filtered it a couple of times during heating it up.

Thanks!

Tina

Philipians 4:13 I can do all things through Christ who strengtheneth me.

<A

HREF= " http://delphaussoaps.safeshopper.com/ " >http://delphaussoaps.safeshopper.co\

m/</A>

If it isn't natural, what is it?

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  • 10 months later...

My husband Arun too had herpes zoster(shingles) on his

hand during our honeymoon and soon after he developed

symptoms of Achalasia! Can anyone throw some light on

the subject please? What is the connection??

thank you

Anusha

--- achalasia wrote:

> There are 11 messages in this issue.

>

> Topics in this digest:

>

> 1. Shingles

> From: " Noelene Snook "

> <noelenesnook@...>

> 2. Re: NEW MEMBER

> From: " ozpete59 " <ozpete59@...>

> 3. Re: Shingles

> From: lindwood@...

> 4. Re: Re: NEW MEMBER

> From: lindwood@...

> 5. Re: Shingles

> From: " Diane Reynolds " <d1dn@...>

> 6. Re: Digest Number 455

> From: gina vallery <gvallery@...>

> 7. Re: Re: NEW MEMBER

> From: jptoyz3@...

> 8. Thoracotomy

> From: " conniepitt3 "

> <conniepitt3@...>

> 9. Re: Thoracotomy

> From: " judyb63146 " <judyb63146@...>

> 10. Re: Thoracotomy

> From: lindwood@...

> 11. Reminder - Chat

> From: achalasia

>

>

>

________________________________________________________________________

>

________________________________________________________________________

>

> Message: 1

> Date: Thu, 24 Jan 2002 16:56:57 +0800

> From: " Noelene Snook " <noelenesnook@...>

> Subject: Shingles

>

> Hi, Noelene from West Australia here. Went with my

> daughter who has A to see

> the surgeon this week.The meeting was okay, but

> and you others explain

> and describe symptoms and procedures SO much

> better.I had to keep my mouth

> firmly closed incase I said " but said " . When

> pressed on his theory of

> the cause of A, he did mention that a few of his

> patients had had a bout of

> Chicken Pox before they developed A symptoms. Louise

> my daughter had

> shingles before she developed hers.Kindest regards

> to you all, Noelene.

>

>

_________________________________________________________________

> Send and receive Hotmail on your mobile device:

> http://mobile.msn.com

>

>

>

>

________________________________________________________________________

>

________________________________________________________________________

>

> Message: 2

> Date: Thu, 24 Jan 2002 10:56:47 -0000

> From: " ozpete59 " <ozpete59@...>

> Subject: Re: NEW MEMBER

>

> G'day Joann

> I am just writing to say how blown away I am from

> reading your story

> and shocked a how you were treated due to such a

> lack of your doctors

> knowledge of this disease. It helps me realise that

> although I have

> my problems there is always someone worse off than

> me.

>

> Very best regards from .

>

>

>

>

________________________________________________________________________

>

________________________________________________________________________

>

> Message: 3

> Date: Thu, 24 Jan 2002 06:36:32 -0600 (CST)

> From: lindwood@...

> Subject: Re: Shingles

>

> Noelene,

> What is the doctor going to do for your

> daughter? It's interesting

> about shingles/chickenpox. We should do a poll and

> see how many of us

> say that. My doctors have never asked me about

> shingles, I forgot to

> tell them, and it wasn't on the HUGE questionnaire

> that I had to fill

> out prior to diagnosis.

>

>

>

>

>

>

________________________________________________________________________

>

________________________________________________________________________

>

> Message: 4

> Date: Thu, 24 Jan 2002 06:44:16 -0600 (CST)

> From: lindwood@...

> Subject: Re: Re: NEW MEMBER

>

> Joann,

> Your story made me cry. I read it right before

> I went to sleep

> last night. I am SO SORRY that you have had to

> endure the gross

> negligence and insensitivites from your doctors that

> you have

> encountered. You must have the brightest halo in

> the achalasian angel

> army by now. Injustice is a word that creeps up in

> my mind as I read

> your beautifully written account of your life with

> " A " . Your husband

> sounds like your best friend. Thank God you have

> had him to walk with

> you throughout your experiences. You deserve the

> very best that life

> has to offer. Your story touched my heart so

> deeply. God bless you,

> welcome to the group, and THANK YOU for posting your

> story. We do care.

>

>

>

>

>

>

________________________________________________________________________

>

________________________________________________________________________

>

> Message: 5

> Date: Thu, 24 Jan 2002 07:51:39 -0500

> From: " Diane Reynolds " <d1dn@...>

> Subject: Re: Shingles

>

> th

> it is so funny you are talking about shingles, 2 yrs

> ago I was rushed in the

> ambulance for wicked pain in the left arm up to

> shoulder and chest and could

> not breath, the er said i had shingels, I did not

> have no rash or anything

> it just came on sudden,I was in the shower and

> before i knew it I was in

> agony and could not breath

> Diane

>

> From: lindwood@...

> Reply-achalasia

> achalasia

> Subject: Re: Shingles

> Date: Thu, 24 Jan 2002 06:36:32 -0600 (CST)

> MIME-Version: 1.0

> Received: from [216.115.96.73] by hotmail.com (3.2)

> with ESMTP id

> MHotMailBE19494B00294004319BD8736049976B420; Thu, 24

> Jan 2002 04:38:04 -0800

> Received: from [216.115.97.166] by

> n23. with NNFMP; 24 Jan

> 2002 12:36:37 -0000

> Received: (EGP: mail-8_0_1_3); 24 Jan 2002 12:36:36

> -0000

> Received: (qmail 12716 invoked from network); 24 Jan

> 2002 12:36:32 -0000

> Received: from unknown (216.115.97.167) by

> m12.grp.snv. with QMQP;

> 24 Jan 2002 12:36:32 -0000

> Received: from unknown (HELO

> mailsorter-105-1.iap.bryant.webtv.net)

> (209.240.198.119) by mta1.grp.snv. with

> SMTP; 24 Jan 2002 12:36:32

> -0000

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> From sentto-1073445-2851-1011875796-d1dn Thu, 24 Jan

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> X-eGroups-Return:

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sentto-1073445-2851-1011875796-d1dn=hotmail.com@...

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=== message truncated ===

__________________________________________________

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  • 4 weeks later...

Thank goodness, indeed! That's why I share so much. I'd love to be able to

save someone some of the trouble we went through. For the first surgery, my

daughter had had a misdiagnosed ruptured appendix for a month. For the

second surgery, she again had had a misdiagnosed ruptured ileum for a week

and had been in shock, and had widespread peritonitis both times. So both

surgeries were necessary, moments before death emergencies - but the

misdiagnoses?

That's one reason it's so important to find out the reason for an iron

deficiency. But I don't want to frighten people about IBD; for most people

who have IBD it isn't nearly so extreme.

> Date: Wed, 20 Feb 2002 12:52:51 -0800

> From: bianca3@...

> Subject: Re: iron/caraggeenan/oils

>

> I cringe at the paces some of you folks have been put through. Iron

> supplemnts? Surgery for IBD? Ugghh!!! Thank goodness there is a list like

> this that we can learn from each others experiences.

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  • 2 years later...
Guest guest

I will be doing a talk for the Surgical Weight Loss Support Group in

November (it will be here quicker than we think!). I will be talking about

coping with the holidays. Any creative ideas or suggestions for this

presentation?

Bridget Klawitter PhD, RD, CD, FADA

Director, Clinical Nutrition and Diabetes Services

All Saints Healthcare

Racine WI

(262)687-2411

bklawitter@...

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Guest guest

Please post to the list.

J. Sams MS RD/LD

>From: " Kurt & Bridget Klawitter " <macalpin@...>

>Reply-

>< >

>Subject: Re: Digest Number 456

>Date: Sat, 31 Jul 2004 14:04:14 -0500

>

>I will be doing a talk for the Surgical Weight Loss Support Group in

>November (it will be here quicker than we think!). I will be talking about

>coping with the holidays. Any creative ideas or suggestions for this

>presentation?

>Bridget Klawitter PhD, RD, CD, FADA

>Director, Clinical Nutrition and Diabetes Services

>All Saints Healthcare

>Racine WI

>(262)687-2411

>bklawitter@...

>

>

>

>

>

>

>

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  • 2 months later...

Suzi,

Thanks for the clarification on castor oil cloth storage. Right now I am up to 3

super W (wormwood), 3 clove capsules 3 X day and 2 tsp. of walnut tincture 1 X

week. I did a Schultz cleanse prior to doing this. I can't do just juicing

because it goes right through me. I don't have a problem with constipation. I

made vegetable juice yesterday afternoon with cucumber, beets and carrots and it

took about an hour to pass. I tried MSM before without results so didn't

continue, but it wasn't for swollen tendons. I will check into using it again. I

am also starting my days with 1/2 lemon and cayenne in a quart of warm water,

taking lemon egg and panther pass daily. I drink Kombucha as well and tying to

eat sprouts on a daily bais. Little steps, but important ones I think.

check Message 8809 as it gives info on reusing

With the parasite deal... tell us how many and how often you are taking and if

you are doing any cleansing with it.

Are you trying any MSM for the achilles?

Suzi

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