Re: questions

[Guest guest]

In a message dated 2002.09.22 20:21:12 Eastern Daylight Time,

JR429FLA@... writes:

> I am going to the nSG tomorrow to discuss surgery. What kind of questions

> should I ask him.

Hi ,

There is a section about what to ask the doctors before surgery at wacma.com,

but here is what it says:

Things to discuss with your doctor BEFORE surgery

1. How many ADULT ACM Patients have you seen?

(change this to pediatric ACM patients for those of you dealing with children

with ACM) There can be huge differences between the adult and the pediatric

form of this condition. While there are some specialists who are well versed

in both, many more have expertise in one or the other. It is not always

interchangeable!

2. What exactly do you plan on doing to me, and how many surgeries of this

type have you done? Unfortunately, because ACM is still rather rare, we don't

often find specialists with hundreds of surgeries under their belts. Ideally

you won't be the first ACM patient the doctor has operated on! (In this case

being number 1 is definitely NOT an advantage!)

3. How do your patients do post-op? What about long-term?

Watch out for anyone who promises you you will be cured. Or that all of your

symptoms will disappear. While these are things to hope for, and are

certainly possible, you should also be prepared for a lesser result. A good

result is often defined in the research papers as a halt in the progression

of symptoms. Many people get relief from some of their worst symptoms. Many

people stay the same. A few get worse. Be sure and talk about this.

4. What is your usual follow-up routine post-op?

Standards vary from place to place, but you should know how often you will

need to see the doctor, get an MRI etc, etc. assuming all is well. A few

people were told they needed no further followup after the surgery. I

personally think that's a bad answer. I'd be looking elsewhere.

5. How do you handle pain control for your patients?

This is the one thing many of you wished you had asked your doctor about. As

we know from our membership, standards vary widely. But there is NO REASON

you have to endure this surgery without adequate pain relief. Being told that

the surgery is more dangerous with pain meds is simply not true in this day

and age. Pain pumps, morphine, percocet, and a whole host of other narcotic

medications are being used for this procedure safely. There are those who had

to do the surgery without narcotic pain relief. We will never forget it. The

majority of people on our list who have had the surgery had pain control. Ask

about a pain team at the hospital...many hospitals have them. Also talk about

nausea control...another big problem for some people.

6. Who do I call if I have problems down the road?

Many people expressed confusion as to whom to call ...their family doc?

neurologist? surgeon? You can get some idea of the doctor's view of follow up

by the answer to this question.

7. What happens if I still have symptoms after surgery or they come back?

Very important...and something that is difficult to talk about. For the

surgeon it can feel like a failure..he didn't *cure* you...you should know

how the surgeon feels about this, whether he considers this possibility, and

how he handles it. How he will deal with YOU if you fall into this category.

8. How soon will I be able to resume daily activities?

While this will vary depending upon each case you should have a baseline idea

of the timeline. If it doesn't seem realistic, ask questions.

9. Is there one of your post-op patients I can speak with?

Nothing beats advice from the horse's mouth, so to speak.

10. If you were in my position...what would YOU do? Who would you want to

operate on you?

An excellent way to get ideas for second opinions.

11. What is the reason that this procedure is necessary at this time?

12. What are the options if this procedure is not done?

13. What will / might happen if the operation is not done?

14. If the operation is not done at this time, can it be done later?

15. What are the advantages and disadvantages?

16. What is the anticipated outcome of the procedure?

17. What exactly are the expected or possible benefits of doing the

procedure?

18. What are the specific risks that this procedure involves?

19. What is the recovery process after this procedure ?

20. Are there any other possible cause of compression? eg: odontoid process?

After you've asked these questions always get a second opinion.

[Guest guest]

I didn't have any complications after the surgery, except 4 wks post op i

got a horrible headache but i think it was a mix of the weather and the fact

i was trying to get off the muscle relaxers i think my muscles in the neck

and head just weren't ready for it yet.

I was up and moving around after 2 weeks. As far as being able to get out

of bed i couldn't do that until day 4 and that was just to go to the

bathroom, it wasn't because i had restrictions it was because i couldn't

hold my head up, i had learned to eat barely even upright.

As far as after surgery i guess you still have chiari i don't really know,

with some people they require more surgeries but remember that this group

consists of people who are newly diagnosed and those who have complications

and it is not a accurate percentage of chiarians. Most people have surgery

it's a success and move on with their lives, and a few continue to hang out

to help others (which i think is a great thing, and i plan on doing just

that)

I had my surgery on a tuesday and was taken to ICU then wednesday evening

they had a bed for me on the neuro unit, it's typical to be in icu overnight

after your surgery just to make sure everything is okay, they usually do

that after any operation on the skull. Family got to come in once i was

moved to icu for a few minutes then they had to go along with icu visiting

hours, which varies with each hospital mine were. 9am-9:30, 11am-11:30.

2:00pm-2:30, 5:00pm-5:30. and 9:30pm-10:00. That way you can get the rest

that you need. Icu was much better than i expected, my nurse had 2 patients

and if she wasn't with us she was at a desk in between the two rooms, so i

always had help when needed.

As far as a website be sure to check the WACMA site which has a bunch of

important information, it calmed most of my fears. Also you can visit my

chiari site with my story, photos after surgery, and an explanation of the

surgery i had. http://www.angelfire.com/ok4/jessicasworld/chiari.html I had

a posterior fossa decompression with duraplasty and laminectomy of c1 and

c2.

Hope this helps,

Jess

QUestions

> hello everyone,

> I was wonder has any one had any complications after the surgery, like

> infection and such?

> how long do you have to be on bed rest after surgery?

> after you have surgery do you not have chiari anymore?

> after the surgery right after can family visit you?

> do you all know of any sites that go into the surgery step by step detail?

> if you could help me i would appercite it very much. im having surgery

soon

> and scared and happy at the same time.

> thanks all,

>

>

>

>

[Guest guest]

In a message dated 11/22/2002 7:41:48 PM Eastern Standard Time,

LaurieJill@... writes:

> Is it possible to post the answers to the whole

> group as well ???? or.... should I post a request that I be sent the answer

>

> too?????

>

Well, sure we could post EVERYTHING to the group, but we'd have about 1000

messages a day! Usually if it is a post that you think will concern more than

just a few people, you can send a message out to the whole group saying,

" Please keep this on list. "

Otherwise, just send a message to the person who wrote the original post and

ask that the responses be forwarded to you. People are usually more than

happy to comply. Take care.

Joanna/Atlanta (17 years)

ACM1-17mm with Syrinx from C1-T6 (dissipating...YAY)! And Neurocardiogenic

Syncope (resulting from miscommunications between brainstem and heart).

Medication is making a big difference! I have some residual issues, but I am

doing GREAT!

You can view my story at:

http://www.pressenter.com/~chip/joanna.htmhttp://www.pressenter.com/~chi\

p/joanna.htm

Check out the Wacma Kids group at: http://groups.yahoo.com/group/wacmakidshttp://groups.yahoo.com/group/wac\

makids

I can also be reached at Joanna@... or KidsAsk@...

" You have brains in your head. You have feet in your shoes. You can steer

yourself any direction you choose. You're on your own. And you know what you

know. And YOU are the one who'll decide where to go. "   -Dr. Seuss

[Guest guest]

> Hi everyone. I'm feeling a little better than usual today, which is a

nice little break. I hope you're all feeling well too. One question, my

nsg said that the only way to check CSF flow is a LP, which they did. My

reading was 22 or 220. But then everyone talks about the CINE mri to check

CSF flow. So they said the LP was inconclusive, because it wasn't high

enough to be PTC. Well that's what he said. Well I'm still one of those

people left behind with no diagnosis and currently no hope for one in the

future, unless someone comes along and figures out what's wrong with me. I

think at least the doctors have decided there's nothing wrong with me

because my decompression went fine....right.....

A CINE MRI shows if your cerebral spinal fluid (CSF) is flowing, if there is

a blockage somewhere. CSF pulses with your heartbeat. You could have a

minor blockage, and still have some csf get through that area with your

heartbeat. A CINE does not measure your intracranial pressure.

A lumbar puncture shows the intracranial pressure (ICP). A reading of 22 is

high, but not terrible.

The normal pressure for is 15 mm/Hg or 150 mm - 200 mm of water. If you are

taking a diuretic, your pressure could register lower. Your doctor should

have had you strain, hold your breath... You were probably in the fetal

position when the LP is done, and just straightening out your legs will

change the pressure.

Kathleen

[Guest guest]

I am a little anxious over that not because of the outcome but

because of the pain and probably bruising I will get. My family doc

did a breast exam and I did have bruising just with that.

> Thanks as always.

> Betty

Betty, ultra sounds can be done for mamograms. Perhaps request to

have one of those. I have fibro-cystic breasts, and they usually do

an ultra sound just to be sure that none of the spots are true lumps

as compared to cysts.

Love Lana

[Guest guest]

I am a little anxious over that not because of the outcome but

because of the pain and probably bruising I will get. My family doc

did a breast exam and I did have bruising just with that.

> Thanks as always.

> Betty

Betty, ultra sounds can be done for mamograms. Perhaps request to

have one of those. I have fibro-cystic breasts, and they usually do

an ultra sound just to be sure that none of the spots are true lumps

as compared to cysts.

Love Lana

[Guest guest]

Betty,

Have you had a mammogram before? There isn't anything to be really

concerned about but perhaps as you say, bruising. I do not know how you

bruise, but I wouldn't be too concerned about the test. It's not a standard

that all women have discomfort for this. A manual exam performed by a

doctor is more (in my opinion) traumatic because it's just two fingers

approaching the breasts in a circular pattern - a mammogram is even pressure

on the breast.

About the dental work, it's advisable to take antibiotics if you have a

mitral valve prolapse to prevent bacterial endocarditis before any dental

work, but it's use in the absence of a mitral valve prolapse is

questionable.

Jill

[Guest guest]

Betty,

Have you had a mammogram before? There isn't anything to be really

concerned about but perhaps as you say, bruising. I do not know how you

bruise, but I wouldn't be too concerned about the test. It's not a standard

that all women have discomfort for this. A manual exam performed by a

doctor is more (in my opinion) traumatic because it's just two fingers

approaching the breasts in a circular pattern - a mammogram is even pressure

on the breast.

About the dental work, it's advisable to take antibiotics if you have a

mitral valve prolapse to prevent bacterial endocarditis before any dental

work, but it's use in the absence of a mitral valve prolapse is

questionable.

Jill

[Guest guest]

I have fibro-cystic breasts, and they usually do an ultra sound just

to be sure that none of the spots are true lumps as compared to

cysts.

--------------

I have posted on this subject before but it is probably worth

repeating. An alternative therapy for fibrotic cysts is Lymphatic

Drainage. It has been proven effective in both reducing, and in

some cases, eliminating the cysts by improving lymphatic circulation

in the breasts.

It is an extremely gentle procedure, using " pressure " equivalant to

the weight of a nickel. Place a nickel on the back of your hand to

get an idea of how light the touch is. It is also done with the

flats or pads of the fingers and not the finger tips so there is no

sensation of poking or prodding. It is more of a circular, sweeping,

brushing motion in the direction of lymph flow. It is also

something that you can be taught to do on and for yourself as part

of your own breast examinations.

But because it does involve working directly on or with the breast

tissue, scope of practice laws vary from state to state as to what

licenses or certifications are required to be able to legally

perform the procedure. I do not know what the individual state

requirements are, other than knowing that they vary. One state might

limit practice to a licensed doctor while another would extend it to

PTs and still others would allow it to be done by a massage

therapist with written waiver/consent forms. And in some states it

is totally outside the scope of practice for massage. Like I said,

it varies state to state.

[Guest guest]

> I have posted on this subject before but it is probably worth

> repeating. An alternative therapy for fibrotic cysts is Lymphatic

> Drainage. It has been proven effective in both reducing, and in

> some cases, eliminating the cysts by improving lymphatic

circulation

> in the breasts.

Oh my gosh, Mike, I had no idea on this!! Can you tell me about

Nebraska's laws? Thanks in advance!

Love Lana

[Guest guest]

-Hi Cheryl, I have a lot of muscle involvement, I had a really bad

flare last year and lost a lot of strength/muscle tone, now I'm on

prednisone for a year and just have a lot of fat!!HaHa! My muscles

all hurt like I had done 24 hours straight of Jane Fonda, but I had

not done ANYTHING. It was the lupus attacking my muscles, I got

where I could not dress/undress or even reach up and touch my nose.

I have not gotten like that again, but have been on

prednisone/plaquenil since then, not going off totally at all. You

are asking the right people, lupus always has an exception from what

you read. Good luck!!!!

-- In LUPIES , " brian_mosher2002 "

wrote:

> Cheryl,

>

> Lupus can affect your muscles. I currently don't have any organ

> involvement, but all of my muscles are affected. Lupus can attack

> any and all tissue in your body. Lupus also can be accompanied by

> fibromyalgia which is very painful for your muscles. I have

> both...just lucky I guess. Have your doctor check you for Fibro

> also. Lupus doesn't usually come alone, it brings it's bad friends

> too.

>

>

>

>

> > Hi Everyone,

> >

> > I have a question for all of you. I read that Lupus does not

affect

> > large muscle groups, like back, neck, etc.... I have terrible

neck,

> > shoulder, and lower back pain, and I am wondering if it is

because

> of

> > the lupus?

> >

> > Also, does anyone else have optic neuritis? Do you take

medication

> for

> > it, other than steroid meds? I am terribly frustrated with my

optic

> > neuritis, my neuro-opthamologist doesn't want to treat it because

it

> > doesn't affect my vision. But the pain is terrible!

> >

> > I am so new at this.... I am currently waiting for my dr to call

me

> > back with results from my urinalysis, it seems they found

> something! I

> > know from the last one that my protein, WBC and bacteria were

> high!

> >

> > Never a dull moment! Lots of hugs to everyone, and good wishes

for

> > pain-free (or at least pain-mild) days!

> >

> > Thanks everyone!

> >

> > Cheryl J in GA

[Guest guest]

-Hi Cheryl, I have a lot of muscle involvement, I had a really bad

flare last year and lost a lot of strength/muscle tone, now I'm on

prednisone for a year and just have a lot of fat!!HaHa! My muscles

all hurt like I had done 24 hours straight of Jane Fonda, but I had

not done ANYTHING. It was the lupus attacking my muscles, I got

where I could not dress/undress or even reach up and touch my nose.

I have not gotten like that again, but have been on

prednisone/plaquenil since then, not going off totally at all. You

are asking the right people, lupus always has an exception from what

you read. Good luck!!!!

-- In LUPIES , " brian_mosher2002 "

wrote:

> Cheryl,

>

> Lupus can affect your muscles. I currently don't have any organ

> involvement, but all of my muscles are affected. Lupus can attack

> any and all tissue in your body. Lupus also can be accompanied by

> fibromyalgia which is very painful for your muscles. I have

> both...just lucky I guess. Have your doctor check you for Fibro

> also. Lupus doesn't usually come alone, it brings it's bad friends

> too.

>

>

>

>

> > Hi Everyone,

> >

> > I have a question for all of you. I read that Lupus does not

affect

> > large muscle groups, like back, neck, etc.... I have terrible

neck,

> > shoulder, and lower back pain, and I am wondering if it is

because

> of

> > the lupus?

> >

> > Also, does anyone else have optic neuritis? Do you take

medication

> for

> > it, other than steroid meds? I am terribly frustrated with my

optic

> > neuritis, my neuro-opthamologist doesn't want to treat it because

it

> > doesn't affect my vision. But the pain is terrible!

> >

> > I am so new at this.... I am currently waiting for my dr to call

me

> > back with results from my urinalysis, it seems they found

> something! I

> > know from the last one that my protein, WBC and bacteria were

> high!

> >

> > Never a dull moment! Lots of hugs to everyone, and good wishes

for

> > pain-free (or at least pain-mild) days!

> >

> > Thanks everyone!

> >

> > Cheryl J in GA

[Guest guest]

Kerry definitely split it maybe even three times a day, but at least twice. the

adrenal support you should take at least 4 month then try to slowly wean off it,

but if you start feeling bad, you may need it longer. I think I have read 4

months to up to 2 years for adrenal support.

*Artistic Grooming * Hurricane, WV

Fat cat? Diabetes? Listowner for overweight or hypothyroid cats

http://groups.yahoo.com/group/hypokitties/

[Guest guest]

Hi Tigger!! Hey, congrats on getting the Armour script for 3 grains!

Since you are already on 3 grains of the generic, you should notice

even better results from the 3 grains of Armour.

Can you remind me: why are you now on adrenal support?? Did you have

problems on the 3 grains generic? Have you done the 24 hour adrenal

test? Or do you have obvious symptoms of low adrenal? Have you done

the pupil test, for example?

And remind me---have you ever mentioned testing your Ferritin?

That's a very important issue to correct before that surgery.

Janie

> My doc ordered my Armour.... 3 grains. Am I better off splitting

the dose or taking it all at once

>

> Also I'm taking ... Cortef, I think.. It's what Gracia told me to

take... how long do you have to take that? Any ideas.

>

> Anything else I should be doing to help my body. I'm going in for

surgery on March 10th and want my strength built up as much as

possible.

>

> Some day when I can decifer the Wmns Hormones stuff, I would like

to know more about that. I've been on the pill for years to prevent

ovarian cysts and horrible PMS.

>

> Anyway, lets just deal with the Armour and Cortef for now.

> Thanks guys,

> Tigger

[Guest guest]

I think she meant the reply to go to Tigger

Lynda (in the UK)

Re: Questions

Thanks Val, but, I have NO idea what you are

responding to

Kerry

--- T artisticgroom@...> wrote:

> Kerry definitely split it maybe even three times a

> day, but at least twice. the adrenal support you

> should take at least 4 month then try to slowly wean

> off it, but if you start feeling bad, you may need

> it longer. I think I have read 4 months to up to 2

> years for adrenal support.

> *Artistic Grooming * Hurricane, WV

> Fat cat? Diabetes? Listowner for overweight or

> hypothyroid cats

> http://groups.yahoo.com/group/hypokitties/

>

[Guest guest]

I have been out of it, so please forgive this question. What are you having

surgery for? It is very important to tell your Dr that you are taking steroids!

Why are you taking steroids?

Questions

My doc ordered my Armour.... 3 grains. Am I better off splitting the dose or

taking it all at once

Also I'm taking ... Cortef, I think.. It's what Gracia told me to take... how

long do you have to take that? Any ideas.

Anything else I should be doing to help my body. I'm going in for surgery on

March 10th and want my strength built up as much as possible.

Some day when I can decifer the Wmns Hormones stuff, I would like to know more

about that. I've been on the pill for years to prevent ovarian cysts and

horrible PMS.

Anyway, lets just deal with the Armour and Cortef for now.

Thanks guys,

Tigger

[Guest guest]

Personally, if you have adrenal issues, I definitely would NOT take

Armour in one daily dose. This would be disasterous for me.

I would divide it up into 3 equal doses. That works out to a dose

every 8 hours, or one in the morning, one in the afternoon and one

at bedtime. This will be much easier on the adrenals.

Tish

[Guest guest]

> I think she meant the reply to go to Tigger<

Yes, sorry! LOL

Artistic Grooming

Hurricane, West Virginia

[Guest guest]

Janie,

Yeah, my doc is a peach. I kept explaining to her that the Vit. D problem... or

symptoms and the fibro and chronic fatigue were the same as low thyroid.... I

also told her I bought some from out of the country and felt better on it.

Okay, I don't feel better consistently, but I don't feel awful consistently

anymore either. She asked how much I was taking and i told her 3 grains.

That's what she ordered after doing tons of research herself and agreeing that

the calcitonin in the Armour would help me. She is always amazed at the

research I do.

I had trouble when I first started taking the Armour last summer and the

generic... I was taking Delta but didn't absorb it. Cortef dissolves in my

mouth... trust me I can stand the taste of almost anything because that's the

only way I can absorb things.

My 24 hour urine test came back fine.

My ferritin is good, as I supplement that as well.

Thanks for taking interest, Janie.

Tigger

Re: Questions

Hi Tigger!! Hey, congrats on getting the Armour script for 3 grains!

Since you are already on 3 grains of the generic, you should notice

even better results from the 3 grains of Armour.

Can you remind me: why are you now on adrenal support?? Did you have

problems on the 3 grains generic? Have you done the 24 hour adrenal

test? Or do you have obvious symptoms of low adrenal? Have you done

the pupil test, for example?

And remind me---have you ever mentioned testing your Ferritin?

That's a very important issue to correct before that surgery.

Janie

[Guest guest]

Aires,

Is your step daughter in counseling? Needs to be.

Maybe she could sleep in your room on the floor. Maybe she could speak to

counselor why she is not sleeping. Not a good sign.

You are doing the right things by making her get up to go to school. Know it's

hard, just try to remain level. We are all human -- yes they push our buttons.

Try to remove yourself from the sitution -- just do what you h ave to do!

Carol

-------------- Original message --------------

> Hi everyone,

>

> Questions: Does a bp really forgets about conversations, Do they

>

> really not able to keep up with important things, such as glasses,

>

> pocketbooks, cell phones. But can keep up with un-important items.

>

> My bp s-daughter is a very beautiful, smart, very intellagent, but her

>

> actions makes her ulgy. She is dying her hair very dark brown (looks

>

> black to me). All she wants to do is wear Black. She writes on her

>

> arms with some kind of symbles.

>

> After reading alot of others post, about bp's wants to be the center

>

> of attenion, I have been more aware of what she is doing. She hates

>

> me so much, She is wanting all the attention from her father. She has

>

> even said on night that she was very scared she couldn't go to sleep

>

> and wanted to sleep with us. The first night, I agree, hoping she will

>

> let me into her heart. My h or I didn't sleep too well that night. The

>

> next night it started all over again. This time she got between us.I

>

> was very concern about this. I called my h that day and discuss this

>

> with him. Told him, this isn't right for her to sleep with us. He

>

> agree also. That night she started again about sleeping with us. We

>

> told her that she was too big to sleep with us, along with reasons

>

> why. She got upset about it. That night several times my h told her it

>

> was time for bed and cut the lights out, she had to go to school the

>

> next day. We don't know what time she finally went to sleep.He gave up

>

> telling her, and it was keeping me awake also. The next morning I

>

> started waking her up when I get up.(at her request) so she could

>

> wake up. It's very hard to get her awake anyway. Take in mind I am

>

> somewhat disable, first thing in the mornings with artherits it's

>

> very hard for me to get around. I have fell in the shower before,

>

> over the bathtub into the floor and broke my coller bone in four

>

> different places one morning.That really hurt. Now I like to get up

>

> and move around before getting in the shower I am getting up about an

>

> hour earlier, than I would have to because of her being here. That

>

> really didn't bother me, because after I got out of the shower, I

>

> could sit down and drink my coffee in the mornings, while she was

>

> getting ready for, than I could finish myself. I have to leave for

>

> work about 10 minutes after her, to go to school. I have try talking

>

> to her about her getting up around 6, several times. At night I

>

> thought she understands, the next mornings it's the same old stuff,

>

> fighting with her to get up. She has to leave about 6:50 to be on

>

> time. Her father takes her, we do not live in her school distrit.

>

> That Friday, after not going to bed, she wouldn't get up, After

>

> spending 1 1/2 hours trying to get her up. and trying to get ready

>

> myself, I lost it with her. I put her feet in the floor and we took

>

> her from under the arms and pulled her up. Boy did she get mad, I

>

> wasn't in to good of a mood either by this time. There was words said

>

> between us. I reminded her that she was the one who wouldn't go to

>

> bed, keep us up also. She was the one that wanted me to get her up

>

> when I did so she could have time to get awake, She didn't like for

>

> me to remind her of her own words. She had made me late for work all

>

> that week, and she was told that. She had the nerve to tell me I

>

> needed to get up earlier so I could be ready before she got up. That

>

> didn't set too well for me and my h. He told her she needed to get up

>

> like she is told to.

>

> She was very mad at me for doing what I felt like needed to be done. I

>

> wasn't having the school on me for her not going to school.

>

> Last year she missed so many days of school because she wouldn't get

>

> up at her mothers. She stayed up all night. She told her mother that

>

> she wasn't coming back here, in tell her father goes and talks to the

>

> consler. Her mother thought it was wrong for us to get her up like

>

> that, even though she acts like that at home. Her mother takes her

>

> side but she takes a water bottle and sprays her to get her up there.

>

> any way her f had made arrangements to talk to the counsler on a

>

> tuesday, that monday her mother called him and said the d counsel the

>

> appointment with him. but she was going. We believe there are so

>

> many lies flotting around the m and d don't want either of us to go

>

> and talk about what, why, or anything else that happens in our home.

>

> The m told my h the d has a problem with me.

>

> anyway she came back after weeks of not coming.on a sat. we discuss

>

> her helping me some on sunday. She was going to stay that week with

>

> us again. Before, when she was here, she left her room a mess, I

>

> refuse to pick up her cloths and wash them. She was to get them up on

>

> sat, she didn't. Sunday, she got up around 2:20pm. came in the kitchen

>

> where I was, asked when was her father coming home. (she rembered he

>

> was going to be gone). Went back to her room, came back and asked

>

> where was her cloths. I told her I went in their and pick them up,

>

> they are in the washer and dryer now. She went into her room, got her

>

> cell phone, snick outside with it.(which I saw it) called her mother

>

> wanting to come home. about 20 minutes later her step-father came and

>

> rang the door bell. she came running out of her room, I ask her why

>

> he was here. she said she was going home. I ask why, and why she

>

> did't let me know she was leaving, I thought she was going to help me.

>

> She went out of the door with her pj's on. To this day we still

>

> didn't know why.She refused to talk to us about it.

>

> A few weeks later, she came back, her and her brother and my h went to

>

> get them stuff to eat. again she was to stay the next week with us.

>

> When I got home from work, my h and I started to fix supper. she

>

> came in there and said my mommy fixed another way. My h was at the

>

> stove. I was just sitting there talking to him. after a few minutes I

>

> just left the room and let them cook. We ate, It really wasn't good.

>

> but I wasn't going to say anything, I ate all of it. I started

>

> putting the dishes in the dishwasher, she told my husband that she

>

> wanted to talk to him, so they went into another room, she wants to go

>

> home. He told her if thats what she want to do, for her to call her

>

> m. After that I was told she wanted to go, I asked her why, I thought

>

> she was staying the following week with us. We told her no one was

>

> mad. We talked to her about what happen the last time she was here,

>

> she said she doesn't remember any of it. She said it didn't have

>

> nothing to do with me. Later her m told my h that she was piss at him,

>

> about what happen that pass weekend. We don't know what she is talking

>

> about. The only thing was the m wanted cloths that were here. We sent

>

> them along with other belongings that belonged to the d. If she's not

>

> going to stay here, she might as well have all of her stuff. She

>

> wouldn't keep her room clean and I got tire of having a room we

>

> couldn't used. I sew some and I moved my machine in there, out of the

>

> middle of the kitchen floor. She got mad about us sending her stuff

>

> back home even though my h sent an e-mail to her along with the e-mail

>

> her m asked for the cloths to come back to her house. She still

>

> refuses to talk to my h, But she sure does play it up to everyone else

>

> that she's not welcome here anymore. Even though she refuses to stay

>

> here when she comes.

>

> My h said, to me he has had enough of her and her behaivor. He is a

>

> lay back person, and for him to say this, He has washed his hands of

>

> his own daughter. He really means it. I have done it a long time ago,

>

> but trying to make the best of a bad situation because of him.

>

>

>

>

>

>

>

> People joining this list must read the guidelines and agree to them before

> posting. Send questions or concerns to WelcomeToOz-owner .

" Stop

> Walking on Eggshells " , a primer for non-BPs, and " Hope for Parents: Helping

Your

> Borderline Son or Daughter Without Sacrificing Your Family Or Yourself " can be

> ordered via 1-888-35-SHELL (). For table of contents, go to

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>

[Guest guest]

no I don't have either UC or Chron's....I have PSC and this is

something that has my doctor baffled....I am also female and 59....he

ththought this was all strange....

>

> =============

> I have been on Urso since March 4th and the last 3 or 4 days I have

> noticed a strange rash all over my trunk....not on arms or legs.....

>

[Guest guest]

>

It's fairly common to have UC or Crohn's, but many people with PSC

don't - I don't and I'm a female age 38. I guess we should count our

blessings that we don't have UC or Crohn's for now!

Liz CT

> no I don't have either UC or Chron's....I have PSC and this is

> something that has my doctor baffled....I am also female and 59....he

> ththought this was all strange....

>

>

>

>