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Hi Louis..My goodness. Your family has unfortunately seen more than its

share of Nf2. God Bless you.

Do ask questions and post your concerns. Everyone is very helpful here.

Carol

land

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Thank you Carol, the idea is that I know that I'll learn lots of things by

sharing experiences with you all

Re: New Member

> Hi Louis..My goodness. Your family has unfortunately seen more than its

> share of Nf2. God Bless you.

> Do ask questions and post your concerns. Everyone is very helpful here.

> Carol

> land

>

>

>

>

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Thank you Carol

Re: New Member

> Hi Louis..My goodness. Your family has unfortunately seen more than its

> share of Nf2. God Bless you.

> Do ask questions and post your concerns. Everyone is very helpful here.

> Carol

> land

>

>

>

>

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  • 3 months later...
Guest guest

Welcome . We are 50 miles west of Houston in Waller. Our son, ,

almost 16 now, has bilateral ANs and 100s of spinal cord tumors. I know you

will find lots of information here. We can totally relate to your statement

about not really having anyone to talk to about NF2. We would be lost if it

were not for the knowledge and experiences that the NF2 Crew share with one

another.

Rhonda Becvar

Waller, TX

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  • 9 months later...

Hi!

I am new to the group and have so many questions--don't want to overwhelm but

here goes... I want to say I am so glad I have found this group!

I am the one who started the poll about birth control pills for blood

control.

I'm 35, I have had 2 hysteroscopic resections (2000, 2003) and I still suffer

from heavy, long periods. My fibroids are a tennis ball (intramural), a

raquetball, and a few golf balls too. I look thin but my uterus is 10 weeks and

I

also feel pressure on my bladder and sometimes bowel, and sometimes pain during

sex. I would like to have a baby...I have a serious boyfriend but I am not

married.

Anyway I guess I am leaning towards an eventual myo but would like to put it

off or avoid altogether if possible. I also would like to get a new doctor or

2nd opinion -- any suggestions in the Chicago area?

My main question is whether I should keep taking the pill. I started on Jan 9

(the first day of my period as my Doc said) and I have been bleeding since

then (very slight right now, but it was heavier than without the pill around day

20--almost hospital-worthy).

I am supposed to start back up tomorrow. It's Ortho TriCyclen Lo. I just

don't understand why I am supposed to start on what should be the 1st day of my

next cycle (any doctors want to answer this?) rather than day 7 of my 'cycle.'

Also it seems counter-intuitive to take hormones when they help fibroids grow.

During these 7 days off the pill (sugar pills), the bleeding lessened and I

feel better emotionally/physically too.

I am supposed to try this for 3 months before giving up, but if it was worse

on the pill than off the pill for the first month, that seems to me like

chances are it won't work in 3.

Any thoughts?

Also wonder if any of you have been able to lessen bleeding with diet

(lowfat), exercise etc? I like to exercise but it has been worsening the

bleeding, so

I guess I need to switch to something less vigorous.

I think that's it for now. I am so glad to be part of this support

group...any thoughts would be welcome.

Cyndi in Chicago

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  • 3 weeks later...

Hi Becky,

I did NOT stop BC before my surgery...I have never heard of Drs.

telling you to do that. In fact, my Dr. insisted I stay on them

(before, during & after surgery) as I am not supposed to try to get

pregnant for at least 6-9 months following my surgery.

Good luck with everything!

Cindy

> One more quick

> question...is it typical for the doctor to tell you to

> stop taking BC a week before surgery? I am worried

> about heavy bleeding pre-op and my iron levels

> dropping.

>

> Thanks and have a good weekend,

> Becky

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  • 6 months later...

What would be making her case so much more complicated than any of the rest?

s.

Re: New member

I really hope we don't have to go the surgery route, we have an apt

today at 2:40 to go back in and put casts back on. Dr Schwend did

say he had another little boy that was as bad as Addisyn if not

worse and he kept him from having surgery. He is pretty

conservative when it comes to surgery so I know he will do whatever

he can to keep that from happening. I am the one who thinks she is

going to have surgery. I guess I just want her feet to change

within the normal perameters of treatment and that just isn't

possible. She'll have to do much more casting than the 6-8 wks.

Her feet look great from what they were when she was born, it's just

the creases she has on the base of her foot are still really bad.

We live in New Mexico and we are going to the best doctor in town.

He has gone to Dr Ponseti's seminars and is certified so I do trust

him. In fact if he questions any part of treatment for a child he

has contacted Ponseti in the past to get his opinion. I just think

he doesn't want to give us false hope that surgery is totally out of

the question. Anyway, we will let you all know how it goes and

thanks for the support, it is much needed!!

Mia

> > > > Hi everyone, I am a new member the the group and just wanted

to

> > > give

> > > > some background. My daughter Addisyn is just over 2 mos old

> and

> > > was

> > > > born w/ bilateral club feet. She has been in casts since

she

> > was 2

> > > > wks. We had the tenotomy done 3 wks ago this Monday and we

> just

> > > got

> > > > into the DBB today. If anyone has some tips about the DBB

or

> > > things

> > > > to look for it would be greatly appreciated. This is

> definately

> > a

> > > > huge adjustment from the freedom she had in the casts!!

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  • 1 year later...

ine

So sorry for your situation. How old is your son and how long has he been

havig problems? I am sure it is devasting for you having to feel your life

ins in danger from your BP

Jean

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Hi, ine

Welcome to the group. I know you will find many caring and supportive

folks here. Although I'm sure others will say the same thing, let me be the

first to suggest you read two books: Stop Walking on Eggshells and

Co-Dependent No More. Both books are real gems and of great help to many of

us in understanding some of the dynamics involved with our bp kids.

I can tell from your post that you love your son very much and that it must

be extremely distressing to hear from another that your life is in danger

and not to allow him in your home.

Although things have been hellish, let me give you some hope: as you learn

and grow and learn to deal with your emotions and set boundaries, you will

find that you are able to separate yourself, both emotionally and physically

from your son and that you can obtain a measure of peace and a life for

yourself separate from your son.

Best to you,

Dot

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my son is 30 and has just been diagnosed for about two weeks...we all

thought it was his bi polar....i am just adjusting to everything...he has lived

with me for 8 years and now has gone to his dad " cause they understand him

better " ... " they do not ignore him " and he can become independent...etc...the VA

hospital just gave up on him and discharged him...he does not want to go into

therapy...and they won't do anything else...

pauline

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thanks dot, i am trying, can you tell how much the books are and where i can

get them??? he just about emptied all my funds...i have to stay alive and

pay bills....to include huge phones he has incurred! thanks for the kind

thoughts and words of encouragement...

pauline

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Hi ine, welcome to the group. I don't post often

but read everyday. It has been very helpful and

reassuring that I am not alone.

I'm so sorry to hear about your troubles. Those are

pretty big diagnoses. How old is he and has he been

put on medication since hospitalization? I'm guessing

he is a young adult since schizophrenia generally

manifests itself in late teens, early twenties. Have

you heard of NAMI? I have not attended meetings with

this organization but plan to in the near future.

Memb ers of this group that attend seem to become more

empowered after attending meetings. Hopefully more

members can share info on it with you. Glad you

joined us.

--- asahanna@... wrote:

>

> just wanting to introduce myself, i am pauline...i

> have a grown son with

> bpd, who currently has been hospitalized five time

> in four months at the VA

> hospitals...he was just diagnosed with this as he

> also is bi polar,

> schizophrenic, ptss...he currently is some where

> (hopefully) in another state after i was

> told my life was in danger and not to let him come

> home again...this has

> been like a living h___ and i am so confused and

> worried...i just want to hear

> more and learn more.....

> pauline

> a mom that wants help too

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

______________________________________________________

Click here to donate to the Hurricane Katrina relief effort.

http://store.yahoo.com/redcross-donate3/

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Hi ine,

Sorry for what you are going through. Think most of us have lived in the web

before and on " eggshells. " Not the happiest of times.

Hope you can relax, put things in perspective and detach while your bp son lives

out of state.

How old is he? Does he call, or are you on a hiatus? I assume from your

message he abused you.

Wishing you peace and calm,

Carol

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

>

> just wanting to introduce myself, i am pauline...i have a grown son with

> bpd, who currently has been hospitalized five time in four months at the VA

> hospitals...he was just diagnosed with this as he also is bi polar,

> schizophrenic, ptss...he currently is some where (hopefully) in another state

> after i was

> told my life was in danger and not to let him come home again...this has

> been like a living h___ and i am so confused and worried...i just want to hear

> more and learn more.....

> pauline

> a mom that wants help too

>

>

>

>

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  • 1 month later...

Hi Jackie,

I can relate to your situation. I started my period at 12 and had cycles that

sound just like yours for a couple of years until my gyn put my on birth control

pills. Which I stayed on until I was 26 and was ready to start planning a

family. Of course, as soon as I was off the pills the crazy cycles started

again, only this time I was skipping months at a time instead of bleeding for

months.

After 2 yrs of dealing w/ this, DH and I pursued infertility testing. I was

just dx w/ PCOS and a T-shape uterus in July, and I just had the lap/hyst w/

metroplasty 4wks ago. While we have diff MAs, the surgery is basically the

same. I would be glad to share more specific details if you'd like.

T-shape remodeled 10/06/05

goldengirl1128 goldengirl1128@...> wrote:

Hi!

My name is Jackie, I'm 21 and I was recently diagnosed with having

a bicornuate uterus and polycystic ovarian syndrome. I got my period

when I was 15 and from that age on, I have had an extremely irregular

cycle, sometimes lasting up to 9 months or more. This coming

Christmas season I am due to have surgery removing some of the tissue

in my uterus that is cuasing some of the problem, I believe I'll be

having a Metroplasty so if anyone here has advice or a similar

condition just let me know.

thank you!

Share bookmarks: http://groups.yahoo.com/group/MullerianAnomalies/links/

Share files:

http://groups.yahoo.com/group/MullerianAnomalies/files/

The Congenital Uterine Anomalies Home Page:

http://www.wegrokit.com/uterineanomalies/

es/

The Congenital Uterine Anomalies Home Page:

http://www.wegrokit.com/uterineanomalies/

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-

I really can't tell you how happy I was to read your reply to my

post. To know that someone has, and has gone through what I have to

go through really makes me feel a lot better because I've been really

nervous about the whole situation lately (it keeps me up at night).

Before I have the surgery, my gyno is putting me on Biest and

Progesterone to regulate my ovaries, and next week I'm actually

meeting with a surgeon for a consultation. I'm basically scared

about the sugery itself, and the recovery. I was wondering if you

went on either of those pills to regulate your period. I too was on

birth control for about 3 months, but I took myself off of it becuase

it made me depressed and I'm not too willing to go back on it, which

is why I will be taking Biest and Progesterone. I was wondering what

you are doing now to regulate your cycle and how the surgery went.

THANK YOU again, it feels great to have someone to talk to

-Jackie

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  • 2 weeks later...

Hello Laptwo,

Welcome to the board. This is a very safe place to share your day and

the experiences your daughter has. You are not alone and you will find

we all have similar fustrations.

My dau, age 17, also felt she was stupid and ugly at 15. Just keep

complimenting your daughter, find one thing you think is beautiful and

let her know. I tell my dau she has a perfect nose. Give her something

to latch on to. I hope you are able to join in your daughter's

counseling and that her counselor is familiar with BPD. If you can

not, I liked the idea, write a letter to counselor. I wish I had never

let my dau see one on her own... giving her privacy. My dau fooled

them all and I am sure she made me look like a bad guy.

>

> Hello. I have a 15 year-old daughter who is currently in counseling.

> She has displaying most of the signs of BPD. I have been trying to

> educate myself on the disorder. It is like living with two different

> people. One minute she is my little girl and the next, she can be

> totally out of control. At first, I didn't want to face reality with

> the cutting and her mood swings, but my goal now is to do what I have

> to do to save her before it is too late. I think (not only because

> she is my daughter) she is very intelligent and beautiful. She is

> always downgrading herself as stupid, fat and ugly.

>

> I am hoping with some support, I can help her.

>

> Thanks for listening.

>

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Laptwo,

It is up to your daughter to help herself. You can lead her to water

(therapist) but you can't make her drink.

Good luck to you,

Many of us have been there.

Carol

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

> Hello. I have a 15 year-old daughter who is currently in counseling.

> She has displaying most of the signs of BPD. I have been trying to

> educate myself on the disorder. It is like living with two different

> people. One minute she is my little girl and the next, she can be

> totally out of control. At first, I didn't want to face reality with

> the cutting and her mood swings, but my goal now is to do what I have

> to do to save her before it is too late. I think (not only because

> she is my daughter) she is very intelligent and beautiful. She is

> always downgrading herself as stupid, fat and ugly.

>

> I am hoping with some support, I can help her.

>

> Thanks for listening.

>

>

>

>

>

>

>

> 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

> http://www.BPDCentral.com

>

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Hi there and Welcome!

My name is DebbieL, very similar situation to yours. Know that you are

not alone in all this w/your daughter. We have been and are there too. My

daughter will be 19 in Jan.

She started her behaviors at 13. Mine is a success story, so don't give up

hope. You will make it through this.

Are you having trouble getting her to go to school? Has she cut, what

behaviors does she exhibit? First step is getting yourself some good books to

read,

educate yourself. SWOE would be one, and another, Co-Dependent No More.

You could go back here and read some of the past posts. Look for my email, then

read mine. You will read about what I have done and what worked for us in

getting my daughter " back " and on the road to recovery. If you like, I could

email you away from the group, but don't leave here. There are a lot of people

here w/some good, sound advice and experience. Don't despair, know that we all

have felt your grief, guilt, frustrations, fears and tears, and feelings of

helplessness and hopelessness.

Here's a hug coming your way................:)

Let me know what I can tell you to get you started.

DebbieL

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Hi laptwo,

I have just joined the group and saw your email as I was looking at

the messages for the first time.

I feel for you well and truly as I have a 16 year old daughter who

is giving me a lot of concern. I too have been remembering

the " little girl " she used to be. She is in big trouble mentally and

re the shape her life is in and is a high suicide risk. She uses

marijuana and has sex. She left home earlier this year but came back

after 3 suicide attempts. Unfortunately she won't currently attend

counselling. But at least she isn't cutting and burning herself

anymore.

I have 3 other children. My 17 year old (almost 18) is a classic

BPD. Her emptionality, rages, abuse of me in particular (but not

only), self-focus and irrationality are hard to cope with. It is a

learning curve though. Hopefully I will come to cope better but it

is tough. Last night after a ghastly set of experiences re her end

of school formal, I was almost convinced I was horrible and crazy.

I'm still not over that actually, hence my joining this group.

Both the 16 year old and the 17 year old are uncontrollable. I can

see a lot of my husband's self-centerdness and anti social behaviour

in them.

My long termhusband is another variety of personality disorder. It

comes down to our being in a DV situation and I am trying to deal

with that. I am very confused about it all. But, if I had lots of

money, I guess I'd be buying a house and leaving, taking whoever but

I guess not the 17 year old. I want to live free of abuse.

All the best with your concerns.

>

> Hello. I have a 15 year-old daughter who is currently in

counseling.

> She has displaying most of the signs of BPD. I have been trying

to

> educate myself on the disorder. It is like living with two

different

> people. One minute she is my little girl and the next, she can be

> totally out of control. At first, I didn't want to face reality

with

> the cutting and her mood swings, but my goal now is to do what I

have

> to do to save her before it is too late. I think (not only

because

> she is my daughter) she is very intelligent and beautiful. She is

> always downgrading herself as stupid, fat and ugly.

>

> I am hoping with some support, I can help her.

>

> Thanks for listening.

>

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In a message dated 11/18/2005 2:14:02 PM Eastern Standard Time,

arielseeker@... writes:

I have 3 other children. My 17 year old (almost 18) is a classic

BPD. Her emptionality, rages, abuse of me in particular (but not

only), self-focus and irrationality are hard to cope with. It is a

learning curve though. Hopefully I will come to cope better but it

is tough. Last night after a ghastly set of experiences re her end

of school formal, I was almost convinced I was horrible and crazy.

I'm still not over that actually, hence my joining this group.

Both the 16 year old and the 17 year old are uncontrollable. I can

see a lot of my husband's self-centerdness and anti social behaviour

in them.

Hello airelseeker, and welcome! Sounds like you could you some support and

advice yourself. I'm sorry you are dealing with this, and especially with two

of them. The chaos and drama you must live with each day. And the other two

siblings I assume are okay?

Does your husband support you in your dealing with the two BPD girls? THis

is a big first step. I am responding to you because mine is a success story

with my daughter. She is going on 19, her behaviors began at 13. If you want,

go through all the past posts from me, or I could just elaborate here for you.

Let me know. We did the contract and it worked for us. What worked was

changing myself, changing my reactions to her actions. I would react in a

totally exact opposite than I normally would act. This made her change her

thinking

and begin to rationalize. This is when her behaviors turned for the better.

Let me know if I can help you in anyway. You are not alone, we are here for

support and advice and the occasional hug as needed :)

DebbieL

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I took my grandson to lunch where is Mom (my daughter) waitresses today.

The hostess came over to say " hello " . She is 's age and told me (in

front of krisitn) how lucky K is for having a Mother who helps her out so much.

She said she had her 16 yr old daughter when she was in high school and that

her Mom always helped her and how fortunatte she knows she was for her Mom's

help. She went on to say I am doing a wonderful thing by helping krisitn.

Krisitn was right there all the time the Hostess was saying these things to

me. Krisitn not only ignored what she said, but changed the subject.

Why would I expect anything more?

Jean

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Hi Jean,

This event triggers some things in me too. Our son and his fiancee hate his

older brother. We think older brother is a great human being. I am sure if

anyone told younger brother how nice his brother was the younger brother

would just be disgusted and furious. Nothing is going to convince him that

his brother is a decent, compassionate good guy. What to do? I don't know,

but I understand how you must feel.

PJ

I took my grandson to lunch where is Mom (my daughter) waitresses today.

The hostess came over to say " hello " . She is 's age and told me

(in

front of krisitn) how lucky K is for having a Mother who helps her out so

much.

She said she had her 16 yr old daughter when she was in high school and

that

her Mom always helped her and how fortunatte she knows she was for her

Mom's

help. She went on to say I am doing a wonderful thing by helping

krisitn.

Krisitn was right there all the time the Hostess was saying these things

to

me. Krisitn not only ignored what she said, but changed the subject.

Why would I expect anything more?

Jean

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In a message dated 11/18/2005 4:45:01 PM Eastern Standard Time,

cascorsam@... writes:

She went on to say I am doing a wonderful thing by helping krisitn.

Krisitn was right there all the time the Hostess was saying these things to

me. Krisitn not only ignored what she said, but changed the subject.

Why would I expect anything more?

Jean

Good for the hostess! Now maybe it might sink in with K? One can only hope.

DebbieL

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In a message dated 11/18/2005 11:23:10 PM Eastern Standard Time,

arielseeker@... writes:

The usual child control stuff is not applicable to us, I think. It is too

late and I should not be living with my husband. But I do use consequences as

much as I can and try not to engage when anyone is behaving pathologically.

Easier said than done. At times now, when I'm in the middle of a bad time in the

home, my fantasy is just to walk out. But of course I am too responsible, etc -

don't forget the etc.

Wow, sounds like you are in a way too far gone situation. You need to get

out. How about finding yourself a local support group and go to some meetings.

No one has to know where you are going, sounds like they wouldn't care

anyway. So sad, so let him control everything. Me, I would stop doing anything

for

anybody. Take care of myself. I would tell him, hey, you want to control

everything? Be my guest. Is there a chance you could go find yourself some

small part time job? Something simple, like it would be a hobby and get you out

of the house. Hell, I'd even stop cooking at this poing. Let king tut do it

since he's insisting on doing all the shopping. Sounds like my house during

my divorce. The creep wouldn't leave the entire year and a half we were going

through it. And yes, he too was an obsessed alienator. He totally

brainwashed my daughter, hence her troubles began. But guess what? After all

is said

and done, she is here, living with me! Doing great! And, doesn't give a hoot

what her father does. So, it backfired on him, but not before he totally

destroyed her emotionally and psychologically. It was a long five years with

her,

and guess who wasn't the supportive parent of her? Thank god I have a great

boss or I would have been unemployed a long time ago. So, hang in there,

easier said than done, I know. But you have to look out for you. Let him deal

with them, since he seems to know whats good.

Hugs,

DebbieL

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Debbie L,

Our bruised babies come back to us because they know we are trustworthy, stable

and there for them. Oddly enough, they crave the structure and guidelines.

Carol

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

> In a message dated 11/18/2005 11:23:10 PM Eastern Standard Time,

> arielseeker@... writes:

> The usual child control stuff is not applicable to us, I think. It is too

> late and I should not be living with my husband. But I do use consequences as

> much as I can and try not to engage when anyone is behaving pathologically.

> Easier said than done. At times now, when I'm in the middle of a bad time in

the

> home, my fantasy is just to walk out. But of course I am too responsible, etc

-

> don't forget the etc.

> Wow, sounds like you are in a way too far gone situation. You need to get

> out. How about finding yourself a local support group and go to some meetings.

> No one has to know where you are going, sounds like they wouldn't care

> anyway. So sad, so let him control everything. Me, I would stop doing anything

> for

> anybody. Take care of myself. I would tell him, hey, you want to control

> everything? Be my guest. Is there a chance you could go find yourself some

> small part time job? Something simple, like it would be a hobby and get you

out

> of the house. Hell, I'd even stop cooking at this poing. Let king tut do it

> since he's insisting on doing all the shopping. Sounds like my house during

> my divorce. The creep wouldn't leave the entire year and a half we were going

> through it. And yes, he too was an obsessed alienator. He totally

> brainwashed my daughter, hence her troubles began. But guess what? After all

> is said

> and done, she is here, living with me! Doing great! And, doesn't give a hoot

> what her father does. So, it backfired on him, but not before he totally

> destroyed her emotionally and psychologically. It was a long five years with

> her,

> and guess who wasn't the supportive parent of her? Thank god I have a great

> boss or I would have been unemployed a long time ago. So, hang in there,

> easier said than done, I know. But you have to look out for you. Let him deal

> with them, since he seems to know whats good.

> Hugs,

> DebbieL

>

>

>

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