Betty

[Guest guest]

Betty

He is a character.

Thank you for your kind words.

I am glad you finally got your son's dx. I sure does make things easier when

you get the dx. Then you at least know where to start.

I am sure you have a lot of info for us newly dx Moms. some of your own

trials and tribulations.

My Mom always told us to learn from other people's mistakes, you don't live

long enough to make them all yourself.

I also look forward to learning what worked for your son. Any ideas are

appreciated.

Does your son still live with you ? Do you have any other kids?

Take care

Dawn

bradley sounds so delightful. i fully understand the hand washing thing now.

i took almost 19 years for me to finally get some answers. my son has as and

he is nearly 20. dx just a little more than a year ago. he used to wash his

hands with such hot water that his hands would get real red. i told the

doctors this but no one told me anything but he had a learning disability.

life has been so hard but now that i know more i am more understanding and i

am enjoying him more. i understand him more. reading about your experience

and the others in the support group is very helpful. thank you and all the

rest. kiss bradley for me. tell him how smart he is to know that he needs to

keep his hands clean.

thank you again,

betty smith

[Guest guest]

hi dawn,

i have wondered if my e-mails got through because they would come back to me.

this is great. anyway i will try to respond as much as possible. yes my son

does still live with me. and i have 2 older children. my daughter is 26 and

still lives with me. she is a great help and support to me. her name is terri.

my as son's name is jacob. i have an older son who lives in washington state

and is married and has 2 children. i have 2 grandchildren. thats where the

e-mail address nanab comes from. anyway if i can help in any way i will try.

jacob while in school was really interesting. i didn't know what was wrong and

the schools sure didn't have a clue. one of the things he really had a problem

with was riding the bus with the other kids. there was a period of time where i

lived in washington where he could ride a public bus and he didn't miss any

school then. but i moved to another school where he had to ride the school bus

and he would call me at work over and over and over untill i would tell him it

was ok for him to stay home. i talked to the school, doctor, councilors, about

his behavor and no one and i mean no one gave me any answers except that i was

to permissive.(of corse they didn't say that to my face). but when he missed so

much school at this particular school district they didn't warn me. i called

every day and asked for help to convince him to ride the bus. i had to be at

work at 5 in the morning and i had to take the phone to work with me or it would

have meant my job. well anyway i called and explained to everyone at that

school and insead of helping me they decided to sue me. isn't that nice. well

anyway my son had had a run in with his father(we have been divorsed for 10

years) and said he was willing to move back to texas with me. i moved and in

the meantime i took matter in my own hands to figure out what is going on. my

disapline works. i had had alot of experience with my older 2 and 2 step

children and they knew better than to cross me. but jacob comes along and just

doesn't get it. this story is getting to long. to make it short i had seen a

movie where a man had cod and anxiety disorder and i saw that in jacob. i went

from there and didn't let anyone cross me. if i didn't like what was said to me

i went to someone else and finally a ph had me buy the book aspergers syndrom.

my life story becan to unfold and there we are. so far. he is on meds.

different ones. one to sleep, one for his personality, one for depression, and

one for seasures. can't spell. they are helping but well it is an uphill

battle. i will stop here and if you have any questions i will try to help.

thanks for writting. i have to go and take him to work.

thanks,

love,

betty smith

Re: ( ) Betty

Betty

He is a character.

Thank you for your kind words.

I am glad you finally got your son's dx. I sure does make things easier when

you get the dx. Then you at least know where to start.

I am sure you have a lot of info for us newly dx Moms. some of your own

trials and tribulations.

My Mom always told us to learn from other people's mistakes, you don't live

long enough to make them all yourself.

I also look forward to learning what worked for your son. Any ideas are

appreciated.

Does your son still live with you ? Do you have any other kids?

Take care

Dawn

bradley sounds so delightful. i fully understand the hand washing thing now.

i took almost 19 years for me to finally get some answers. my son has as and

he is nearly 20. dx just a little more than a year ago. he used to wash his

hands with such hot water that his hands would get real red. i told the

doctors this but no one told me anything but he had a learning disability.

life has been so hard but now that i know more i am more understanding and i

am enjoying him more. i understand him more. reading about your experience

and the others in the support group is very helpful. thank you and all the

rest. kiss bradley for me. tell him how smart he is to know that he needs to

keep his hands clean.

thank you again,

betty smith

[Guest guest]

to make it short i had seen a movie where a man had cod and anxiety

disorder and i saw that in jacob. i went from there and didn't let

anyone cross me. if i didn't like what was said to me i went to

someone else and finally a ph had me buy the book aspergers syndrom.

my life story becan to unfold and there we are. so far. he is on

meds. different ones. one to sleep, one for his personality, one

for depression, and one for seasures. can't spell. they are helping

but well it is an uphill battle. i will stop here and if you have

any questions i will try to help. thanks for writting. i have to

go and take him to work.

>

> thanks,

> love,

> betty smith

Betty,

I think that the older our kids are, the longer it has taken us to

figure out what was going on. As AS becomes more well known, the

diagnoses are coming earlier. But I am sure that there are still

plenty of high functioning Aspies walking around in our schools who

have not been diagnosed. Pat yourself on the back that you kept

looking for answers and finally got some!!

Kathy

[Guest guest]

thanks kathy for the encouragement. you are very sweet.

love,

betty smith

Re: ( ) Betty

to make it short i had seen a movie where a man had cod and anxiety

disorder and i saw that in jacob. i went from there and didn't let

anyone cross me. if i didn't like what was said to me i went to

someone else and finally a ph had me buy the book aspergers syndrom.

my life story becan to unfold and there we are. so far. he is on

meds. different ones. one to sleep, one for his personality, one

for depression, and one for seasures. can't spell. they are helping

but well it is an uphill battle. i will stop here and if you have

any questions i will try to help. thanks for writting. i have to

go and take him to work.

>

> thanks,

> love,

> betty smith

Betty,

I think that the older our kids are, the longer it has taken us to

figure out what was going on. As AS becomes more well known, the

diagnoses are coming earlier. But I am sure that there are still

plenty of high functioning Aspies walking around in our schools who

have not been diagnosed. Pat yourself on the back that you kept

looking for answers and finally got some!!

Kathy

[Guest guest]

Betty,

BTW the nap sounds great but the lat time I took one, the dog jumped on me, on

the couch ( she's not allowed there). I think she thought I wouldn;t notice.

Next nap the crate for her.

Re: ( ) Digest Number 4369

we were eating tonight and Ally was talking about wanting

something

and I went on to explain that everything costs money, her

clothes, detergent

to wash her clothes, water to wash the clothes, electricity to

dry her

clothes, etc. etc. (just to make a point), Even the food she

was eating -

So Bradley says " Yeah, Ally, everything costs money.

Everything! except

special thigh creme that will completely eliminate unseemly

spider veins

free of charge when you purchase this product. That is the

only thing that

is free!!! " HA HA HA HA HA

he really cracks me up

Dawn

Hahahahahaha!! That reminds me of a story from when was

about 4 or 5.

He was talking about something or other and telling me I

should get it. I

didn't have a clue what it was, nor did I want it. I said,

" Where do you

get something like that? " And he replied, " It can't be bought

in any store. "

LOL!

Kathy

[Guest guest]

Betty,

Please don't give up. Seek a good rheumatologist. Your situation should be

evaluated by someone else.

Did you tell your current rheumatologist about the edema?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re:

>I think that makes up my mind and I will get one. My pillow that helps is

>one that is thicker on the neck so that the head is not as high as the

>neck. That way it braces the neck.

>

> Recently there was post about feeling neglected or some such. I don't feel

> like that but really out of place. I have not been diagnosed with

> anything...everything is just great. Ha

>

> Ever since I was small my legs hurt especially like when I walked barefoot

> on wet ground. My mom used to heat flat irons (does anyone remember them?)

> and put to my feet. Then my hips started to really hurt. It felt as though

> you had put one finger in the indent in the hip and pushed and held it

> long enough that the pain is just awful. It is worse when lying down and

> getting up helps.

>

> Now I ache in general with specific areas really hurting. One hip feels

> like the problem spreads out from the groin are until my entire hip and

> leg hurts and makes walking difficult.

>

> I am so much better off than those posting here that I can't really

> complain. Something new has been added but still having had hip pain all

> my life I don't know how these new pains enter the picture. I would like

> to hear how others describe the hip pain.

>

> I am so putout with the rheumy apt. that I don't even feel like going back

> to her. My lab looks like SLE or lupus, my feet and hands intermittently

> go from dark purple to white and recently when they try to check my oxygen

> level the machine just never works. My hands in spite of being painful are

> numb to the point it is difficult doing anything. This comes and goes.

> These last couple weeks I have much edema in my feet. My scales show 5 to

> 10 pounds. I take HCTZ and the edema is still there.

>

> Generally I feel just awful and am tired of chasing doctors. What's the

> use anyway?

>

> Sorry for all the grumbling.

>

> BVan (Betty)

[Guest guest]

Hi Betty:

Have you gotten a second opinion from a good

rheumatolgist? Sounds like the hand problem could be

related to Raynaud's which is also immune based and

often connected to RA; I have it, but not to the

extent that you describe. I, too, have severe hip

pain, most noticeable when I have been sleeping on

that my sides, either one, and when the hip pain

starts, it radiates down my hip to my knee, and then

down into my ankle and foot, really sharp nerve-like

pain. I also have Fibromyalgia - have you been

examined for that?

You also mentioned that you have experienced leg pain

since you were small, and so have I. My parents used

to have to rub my legs so that I could get to sleep,

it hurt so bad. I have had knee problems forever too.

When you describe this, it is exactly how it feels to

me too " It felt as though you had put one finger in

the indent in the hip and pushed and held it long

enough that the pain is just awful. It is worse when

lying down and getting up helps. " exactly.

I really do feel that you should be checked for Fibro,

as the hip pain you describe, and the trigger point

you have noticed in your hip causing severe hip pain,

is one of the trigger points in Fibromyalgia. Perhaps

you have this, and also an arthritic disease.

This sort of thing is best treated by a rheumatologist

who will know the right treatment for you. I am

treated by a rheumy for my RA, OA, Raynaud's and FM,

with medications prescribed for the particular disease

process. She is a great doctor, and really listens to

me, and tries to help.

Don't ever feel that your pain or your complaints are

not to be taken as seriously as that of others in the

group - we do not judge each other's pain. Please get

a second opinion, and don't give up trying to find out

what is causing your pain. There are good doctors our

there who will be able to help you - keep trying. Hang

in there -

Kathe in CA

--- Betty <bvanOmega@...> wrote:

> I think that makes up my mind and I will get one. My

> pillow that helps is one that is thicker on the neck

> so that the head is not as high as the neck. That

> way it braces the neck.

>

> Recently there was post about feeling neglected or

> some such. I don't feel like that but really out of

> place. I have not been diagnosed with

> anything...everything is just great. Ha

>

> Ever since I was small my legs hurt especially like

> when I walked barefoot on wet ground. My mom used to

> heat flat irons (does anyone remember them?) and put

> to my feet. Then my hips started to really hurt. It

> felt as though you had put one finger in the indent

> in the hip and pushed and held it long enough that

> the pain is just awful. It is worse when lying down

> and getting up helps.

>

> Now I ache in general with specific areas really

> hurting. One hip feels like the problem spreads out

> from the groin are until my entire hip and leg hurts

> and makes walking difficult.

>

> I am so much better off than those posting here that

> I can't really complain. Something new has been

> added but still having had hip pain all my life I

> don't know how these new pains enter the picture. I

> would like to hear how others describe the hip pain.

>

>

> I am so putout with the rheumy apt. that I don't

> even feel like going back to her. My lab looks like

> SLE or lupus, my feet and hands intermittently go

> from dark purple to white and recently when they try

> to check my oxygen level the machine just never

> works. My hands in spite of being painful are numb

> to the point it is difficult doing anything. This

> comes and goes. These last couple weeks I have much

> edema in my feet. My scales show 5 to 10 pounds. I

> take HCTZ and the edema is still there.

>

> Generally I feel just awful and am tired of chasing

> doctors. What's the use anyway?

>

> Sorry for all the grumbling.

>

> BVan (Betty)

>

> Re: [ ] Re:

>

>

> Betty, I have a Sam's Club memory foam pillow and

> it is great. It does form very nicely to the neck.

> I usually end up with my arm under my head and was

> having a problems with my hand and fingers falling

> asleep and going numb. It shapes so nicely around

> my arm when under my pillow that it has completely

> eliminated the numbness. I also have a memory foam

> mattress and it has helped my hip pain and therefore

> my sleeping.

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

[Guest guest]

In a message dated 3/8/2006 2:15:51 PM Central Standard Time,

lv2ryd@... writes:

Also having " growing pains "

which were quite severe when a child seems to ring a

bell with many fibro patients.

Growing pains? Can you ellaborate? I can remember when i was young havnig

them in my hips really bad....Hmmm got me wondering now.

from PA

[Guest guest]

Hi Betty:

Yes, I am currently being treated by my second rheumy,

both rheumys dx RA, and the first rheumy dx the fibro,

which the second rheumy also confirmed. My initial

doctor was my primary care doctor, and she treated me

for about 4 years for RA, until she had to move away.

She was great, and right after the blood work, and

with my physical findings, dx RA and started me right

away on aggressive RA treatment. I credit that early

tx with how well I am still doing 8 years post dx.

My dad has raynauds to a much greater degree than I

do, and is treated with medication for it, and has

gotten much better. Don't know the name of the drug,

but I think it something that also treats heart

disease? Maybe a circulatory drug?

I certainly agree with you that all of these diseases

are autoimmune at the root. I also have had asthma

all my life, which I also find is autoimmune disease.

I don't know, maybe my immune system has been a bit

compromised from birth, and these things are just

showing up, maybe with changes in my hormones or

something? Don't know, dx with RA at 45, dx with

Fibro at 50, and then dx with OA at 51. I have had

Raynauds prior to the RA dx, but don't remember just

when - think I have always been more sensitive to cold

weather, even as a child. Also having " growing pains "

which were quite severe when a child seems to ring a

bell with many fibro patients.

Kathe

--- Betty <bvanOmega@...> wrote:

> Kathe,

>

> Thanks for your response, and I want to respond to

>

> What you wrote to as well as to me.

>

>

> Have you gotten a second opinion from a good

> rheumatolgist?

>

> I don't think I've gotten a good first opinion. A

> few years back, about 5 I think I went to see this

> doctor for several months trying to get my sed rate

> down. At first she said it was probably fibro but

> after being on prednisone for a few months it was

> still double the norm. So she replaced the diagnosis

> with a " ? " At that time I had much of the present

> complaints so I think that has been a big negative

> for me. So, I had some of these problems before,

> with an increased sed rate and it didn't respond to

> the treatment, so this is just business as usual. I

> didn't know how bad her assessment was until my

> primary care doc gave me a copy of what she sent

> him. In essence, no problem found. But she scheduled

> another apt. in 3 months. I don't think there is any

> point in it.

>

> The reason I went to a Rheumatologist this time is

> sort of involved. I had developed a severe cough

> that made me stop breathing sometimes. I went to a

> pulmonary doctor and he did a CatScan and quiet a

> bit of lab work. I have been exposed to asbestosis.

> The scan showed multiple nodules in both lungs but

> that doctor said that the cough could not be

> connected to that. He said the cough was part of an

> inflammatory process and I should go to the Rheu. He

> also did a lung biopsy which was negative for

> microbes, molds and cancer. The Scan is to be

> repeated in 2 weeks from now and hopefully those

> nodules would have cleared. His lab indicated to me

> and I think to him also even though he didn't say

> so, that I have SLE or Lupus. I took the lab results

> to the Rheu and she wasn't familiar with the test

> enough to even know what they were. The lab had

> suggested specific other follow up test but she did

> not order any of them but did one test of her own.

> She told me I don't have Lupus and didn't mention

> the SLE. I know Lupus is not that easily ruled out.

> I will see the pulmonary doc in 2 weeks and I will

> try to get information from him although I think he

> will be overly cautious about things outside what he

> specifically is doing. I also have an apt. with my

> primary care before that apt. so I will see what he

> says. I think when I left the office when he had

> given me a copy of her report the impact of her

> report had not really sunk in yet. Now it has.

>

> As to Raynaud's there is no doubt in my mind at all

> that I have it and rather severely. I recently met a

> man who does not appear to show the signs as much as

> mine does and he has had several amputations, toes,

> fingers, feet..

>

> My oxygen level cannot usually be taken because

> " there is something wrong with the equipment " no

> matter where or how many pieces of equipment they

> try. After a surgical procedure with a light

> anesthetic

>

> Coming out of the OR the doctor that had been

> fighting with the O2 level told me that I had better

> get the Raynauds seen about. As you know it is not

> always the same but it takes very little to make it

> rear its ugly head.

>

> Sounds like the hand problem could be

> related to Raynaud's which is also immune based and

> often connected to RA; I have it, but not to the

> extent that you describe.

>

> I, too, have severe hip

>

> I find that interesting. Do you have any insight as

> to any of this? Do you think that can mean that the

> problems that we are having now had it's beginning

> then. The first money I made on my first job bought

> a heating pad and that was like heaven to me.

>

>

> This sort of thing is best treated by a

> rheumatologist

> who will know the right treatment for you. I am

> treated by a rheumy for my RA, OA, Raynaud's and FM,

> with medications prescribed for the particular

> disease

> process. She is a great doctor, and really listens

> to

> me, and tries to help.

>

> I think most if not all of my problems would fall in

> the rheumatology department. However recent labs

> have led me to believe that my problems are

> autoimmune at the root. That includes diabetes and

> that makes the diabetes be a different critter from

> adult type 2.

>

> Don't ever feel that your pain or your complaints

> are

> not to be taken as seriously as that of others in

> the

> group - we do not judge each other's pain. Please

> get

> a second opinion, and don't give up trying to find

> out

> what is causing your pain. There are good doctors

> our

> there who will be able to help you - keep trying.

> Hang

> in there -

>

> I am reading all the post and getting bits of

> information. I have written too much already and I

> am very tired so I will hang it up for the night. I

> appreciate all of you.

>

> Bvan (Betty)

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

[Guest guest]

Hi Betty:

Wow, what an amazing life you and your husband have

lead - you are a very strong woman to have lived like

that, I don't know that I would have been able to pick

up and leave on a minutes notice nor handle the stress

of never knowing when your husband would be back or

where he was. What would have happened if something

had happened to your husband? Would anybody have told

you anything? You guys should write a book!

Thanks to your husband for serving in the military and

doing what he did, and also a big thanks to you, too,

for being there for a man whose job was obviously not

only very secretive but also very important.

take care - Kathe in CA

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

[Guest guest]

I agree with you, wives who were the " other half " like Betty deserve very

special recognition and applause as well!

It certainly had to be VERY hard, I cannot even imagine. Yikes. (gives me

chills)

- In , Kathe Sabetzadeh <lv2ryd@...> wrote:

>

> Hi Betty:

>

> Wow, what an amazing life you and your husband have

> lead - you are a very strong woman to have lived like

> that, I don't know that I would have been able to pick

> up and leave on a minutes notice nor handle the stress

> of never knowing when your husband would be back or

> where he was. What would have happened if something

> had happened to your husband? Would anybody have told

> you anything? You guys should write a book!

>

> Thanks to your husband for serving in the military and

> doing what he did, and also a big thanks to you, too,

> for being there for a man whose job was obviously not

> only very secretive but also very important.

>

> take care - Kathe in CA

>

>

> Kathe

>

> " To ride a horse is to borrow freedom. "

>

>

>

> __________________________________________________

>

[Guest guest]

At the private retirement in the general's office he was awarded an extra

plaque. I was also given one. I don't know if that is the norm or not. So we

have plaques for the wall. Big deal. Someday we may find the box that has all

that stuff in it.

We were just talking about some of this the other day which arose out of a minor

argument. I pointed out to him that I had come within an inch of leaving him

before I knew anything about what he was doing. When he would come in, kiss

goodbye and be off to anywhere for no telling how low. The only reason I didn't

was that I was confident that if what looked like was really happening he would

have been up for court martial as AWOL. As far as I can remember he never even

took a uniform. At one duty station when he was gone he got calls from his

office over and over. I would take a message put it in the drawer under the

phone with the rest of them. They reported accidents to him and when the

accident had occurred during the day they would call in the middle of the night

to report. Once when he had been gone for a couple months one 2AM I got mad and

blew my top. That stopped some of it. But why didn't anyone know he was gone?

Those were my first clues to strange things going on.

Speakng of calls, we were in Northern Turkey when Kennedy was assinated. The

phone service was not good and there were none in anyones house. We lived on

base which was very small. They used runners to deliver messages. About 2 AM

or so someone was banging on our door enough I thought the door would break. It

was the runner advising him of Kennedy. The runner had the incoming message and

that was all he had. My husband took charge from that.

BVan (Betty)

---- Original Message -----

From: dreamer_plus

Sent: Tuesday, May 16, 2006 10:14 PM

Subject: [ ] Re: Betty

I agree with you, wives who were the " other half " like Betty deserve very

special recognition and applause as well!

It certainly had to be VERY hard, I cannot even imagine. Yikes. (gives me

chills)

- In , Kathe Sabetzadeh <lv2ryd@...> wrote:

>

> Hi Betty:

>

> Wow, what an amazing life you and your husband have

> lead - you are a very strong woman to have lived like

> that, I don't know that I would have been able to pick

> up and leave on a minutes notice nor handle the stress

> of never knowing when your husband would be back or

> where he was. What would have happened if something

> had happened to your husband? Would anybody have told

> you anything? You guys should write a book!

>

> Thanks to your husband for serving in the military and

> doing what he did, and also a big thanks to you, too,

> for being there for a man whose job was obviously not

> only very secretive but also very important.

>

> take care - Kathe in CA

>

>

> Kathe

>

> " To ride a horse is to borrow freedom. "

>

>

>

> __________________________________________________

>

[Guest guest]

I DONT REMEMBER RED BUGS BUT I DO REMEMBER LITTLE GREEN ONES

LONG TIME AGO AND FAR AWAY :-)

\BONNIE SUE

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

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

This is in response to Betty, I deleted the email and the address before

replying to her email. I'm not sure which group she's on, so this is for you

Betty.

Barbara

Hi Betty,

I'm sorry I'm so behind on my emails. I'm trying with the Budwig diet now

and hoping for a miracle. Thank you for your welcome.

I won't be taking any prescription drugs, that's why I'm searching for

alternatives. I've never been a believer in any type of drug, they only cover

the

problem. The oxycontin is what my Dr. was going to call the order in for. I

don't know why because I never had any pain until the accident and then not

enough to where I would want to take anything for it.

The chemo and radiation has never made sense to me! I've seen what it can

do. I've had family members who didn't last long after treatment.

Betty, I don't smoke, I used to years ago but only for a very short time. I

know now, a week was too much. But compared to some who've smoked 30/40 years

like my husband and are basically healthy as far as we know.

Thank you Betty for your concern. That's why I love this group.

Barbara