Sue

[Guest guest]

Hello all. Sue H. here. Still real down over the loss

of a good friend the beginning of Dec. Am feeling

okay...the flare I have been experiencing seems to be

lessening finally. Thats at least some good news.

Anyway, just thought I would check in with

ya'll...don't really feel much like chatting...but I

am trying to keep up with as much of the mail as I

can.

Catch you all soon. Luv, SueH

--- angelbear1129@... wrote:

> How are you doing ??? How was your holiday ???

> ((( Concerned Hugs )))

> Helen

>

__________________________________________________

[Guest guest]

I'm So Sorry for the loss of your friend... It is hard to handle ( I'm glad you checked in with us though. We do worry... Please take care of yourself as best as ya can...

{{{ Angel Hugs }}}

Helen

Hello all. Sue H. here. Still real down over the loss

of a good friend the beginning of Dec. Am feeling

okay...the flare I have been experiencing seems to be

lessening finally. Thats at least some good news.

Anyway, just thought I would check in with

ya'll...don't really feel much like chatting...but I

am trying to keep up with as much of the mail as I

can.

Catch you all soon. Luv, SueH

Signature Creations by

PANDORASBOX8

[Guest guest]

Hello...Not to worry...I'm here. Trying to get

better..Have just finished some pool physical

therapy...and have joined an arthritis pool class

which meets 3 times a week. There is some thought that

this type of therapy will easy the fibro pain..and

stregnthen the joints easing the pain from the

conective tissue disease...well, no pain relief yet

BUT..I am able to move a little easier...and I think

its helping me mentally 'cause I have to get out of

the house now. I just wish I could get well enough to

go back to work. This disability stuff sucks!! Ya

know, I always used to love the winter...but I can't

afford the darn heating bills. Oops...I notice I am

beginning to complain so its time to sign off. Take

care everyone. Sue H

--- angelbear1129@... wrote:

> Hi Sue, Haven't heard from you in ages... How are

> you doing??? Worrying

> here... Let us know...

> ((( Worried Hugs )))

> Helen

>

__________________________________________________

[Guest guest]

Complain all you want !!! I'll listen ) That is therapy also !!! Glad to hear from you !!!

My girlfriend does the pool exercise also... She said it helps at times, but not always... She also is doing exercise that I would not be able to do, but she says it also helps, most of the time... She can feel the difference when she doesn't do them... Yes, the cold is so expensive now a days ( The cold makes me hurt worse... You also??? Getting out of the house does help one... Different things to see and look at, if only from a car window )

Have you given Ling your Birthday, if you want to share it ??? How about a complete update for this ole lady here, that has a terrible memory ) I see Fibro and connective tissue disease, what is that ? and arthritis... Lots of bummers ( Thanks for answering )

Sometimes I think I am just talking to my self, which my husband says I do )

((( Special Painless Hugs )))

Helen

"Encourage one another. Many times a word of praise or thanks or appreciation or cheer has kept people on their feet."

- Swindoll

Hello...Not to worry...I'm here. Trying to get

better..Have just finished some pool physical

therapy...and have joined an arthritis pool class

which meets 3 times a week. There is some thought that

this type of therapy will easy the fibro pain..and

stregnthen the joints easing the pain from the

conective tissue disease...well, no pain relief yet

BUT..I am able to move a little easier...and I think

its helping me mentally 'cause I have to get out of

the house now. I just wish I could get well enough to

go back to work. This disability stuff sucks!! Ya

know, I always used to love the winter...but I can't

afford the darn heating bills. Oops...I notice I am

beginning to complain so its time to sign off. Take

care everyone. Sue H

[Guest guest]

Hi Sue good to hear the pool therapy is helping some )

>>Oops...I notice I ambeginning to complain so its time to sign off>>

Hey complaining is OK here ;o) I sure do it enough! LOL ) How are you doing today?!

Jessi

[Guest guest]

--- angelbear1129@... wrote:

> Complain all you want !!! I'll listen )

I'm tired of listening to myself!!!

The old makes me hurt worse... You also??? Getting

out of the house does help one...

Yeah, the cold does make it a bit rough...but,

summer's comming...then I can complain about the heat

Have you given Ling your Birthday, if you want to

share it ??? How about a complete update for this ole

lady here, that has a terrible memory ) I see

Fibro and connective tissue disease, what is that ?

and arthritis... Lots of bummers (

I haven't shared my birthday...'cause I try not to

notice it when it comes. It is in May though...and

this year I will be 51. The connective tissue disease

is (in my case) called " undifferentiated connective

tissue disease " . Depending on which doc you listen to,

its like lupus (could eventually turn into lupus) but

at this point it is not effecting any internal organs.

(Thank GOD!) I think all of these diseases fall under

the umbrella of arthritis... Some of the other folks

might be better able to explain than I. You can even

say its like fibro...but there is something that shows

up in the blood tests with this and so far, they have

no blood tests for fibro.

Thanks for answering )Sometimes I think I am

just talking to my self, which my husband says I do

> )

You should tell your husband that if you don't talk to

yourself, you don't get any intelligent conversation

(LOL) Anyway, glad I am feeling well enough to

respond...I am almost always lurking around somewhere

just not in the mood for " conversation " . Take care of

yourself. Talk to ya soon. Sue

__________________________________________________

[Guest guest]

--- angelbear1129@... wrote:

> Complain all you want !!! I'll listen )

I'm tired of listening to myself!!!

<<<<<<< Then You Plug your ears while telling me, then you will not hear it )

The cold makes me hurt worse... You also??? Getting

out of the house does help one...

Yeah, the cold does make it a bit rough...but,

summer's comming...then I can complain about the heat

<<<<<<<<<<<< Me Too, Never can be happy I guess... But right now I will take the warmth...I don't ache as bad then, but I do sweat a lot, and if I get too hot I will pass out (

Have you given Ling your Birthday, if you want to

share it ??? How about a complete update for this ole

lady here, that has a terrible memory ) I see

Fibro and connective tissue disease, what is that ?

and arthritis... Lots of bummers (

I haven't shared my birthday...'cause I try not to

notice it when it comes. It is in May though...and

this year I will be 51. The connective tissue disease

is (in my case) called "undifferentiated connective

tissue disease". Depending on which doc you listen to,

its like lupus (could eventually turn into lupus) but

at this point it is not effecting any internal organs.

(Thank GOD!) I think all of these diseases fall under

the umbrella of arthritis... Some of the other folks

might be better able to explain than I. You can even

say its like fibro...but there is something that shows

up in the blood tests with this and so far, they have

no blood tests for fibro.

<<<<<<<<<<<<< Hopefully soon they will have a test for Fibro, then a lot of folks will have proof that it is not in there heads ) A May birthday ) 51 is Good !!! I am 51, will be 52 in Nov. So we are both from the same era ) You can have Lupus (SLE) and it not be in your organs...Mine is in remission right now ) I have lost my gall bladder from it...

Thanks for answering )Sometimes I think I am

just talking to my self, which my husband says I do

> )

You should tell your husband that if you don't talk to

yourself, you don't get any intelligent conversation

(LOL) Anyway, glad I am feeling well enough to

respond...I am almost always lurking around somewhere

just not in the mood for "conversation". Take care of

yourself. Talk to ya soon. Sue

<<<<<<<<<<< I Liked that ) He did too ) You don't have to converse if you aren't up to it... BUT, Please just drop a line saying your here...Always have my ears open ) I'm Glad you were up to posting also ) I Do get worried about you all when I haven't heard anything for a while... Please take care of you and rest so you feel a little bit better...

((((((((((((((((((((((((Caring Hugs )))))))))))))))))))))))))))

Helen

Signature Creations by

PANDORASBOX8

[Guest guest]

.....

> You definately give back to this group and it has been a help getting

> to know you and share what is happening. Don't stop!!

>

>

> Thanks.

> How are you doing, this fine spring evening?

>

> Sue

>

[Guest guest]

Dear Sue,

I know what you mean about feeling so much older...I'm 35 and always say I

feel like an old lady. What happens when we're really old?? I don't know

anything about Enbrel but I do know about cancer since my mom and grandmother

both had it and it is scary. It is scary taking something that there isn't a

lot of research about. On the other hand, I feel like even the things we

supposedly " know " so much about, could turn out to be wrong.

I've been having the problem that I'm willing to take risks with my own body,

but not my child's. I have been nursing my 17 month old still and finally

this week decided to wean her (I am giving her 10 more days!). I am now on 5

differnt prescriptions from Prednisone to Plaquenil to Prevacid etc. etc. My

doctor now wants me to take a prescription calcium supplement. I finally

decided how much medicine can I put into one little baby? Sure, they tell me

it is ok to nurse her while I take all this stuff...but is it really? I

don't want to find out in 20 years when she has some major problem that the

doctors were wrong.

Anyway, it is also hard as a mother to feel that you don't want to take risks

with your body because you want to always be there for your kids. This

disease makes us make a lot of difficult decisions and it isn't easy. hang in

there! Love,

[Guest guest]

> Any news on the baby yet???

I didn't hear from my stepmom this morning because she and my dad are out

getting his PET scan. She said she would call me this afternoon when they

get home.

Thanks.

[Guest guest]

Regardless of who is right or not right, mad or not mad we are all her for the same reason, aren't we? We all have the same goal the last time I checked to lose weight and be healthy.

Just please try to keep that in mind~ because that is why I have joined this wonderful group of people

~dd

-----Original Message-----From: Jodee [mailto:jodee@...]Sent: Monday, March 10, 2003 1:34 PM100-plus Subject: Sue

Hey Sue,

If you are so adamant about your feelings about "diets" then maybe you should make your list only for low calorie patients and put in your description that you want no low carb people on your list. If you knew what low carb was you wouldn't be so rude about it. The only difference between low carb and low fat is that in low carb we do not allow all those fat free sugar loaded junk food crap in the cookie isle, etc. But hey, you are so angry about it you will never educate yourself about it.

JodeeTo unsubscribe DO NOT send a message to the list.Please click on this link and unsubscribe:100-plus/join

[Guest guest]

I second that. Hope Ed and Henry are ok. I think I have there names right. Hope to hear from you soon.

NH

Mommy to Abby Liz 10-25-94

Mommy to Anne 7-1-99

[Guest guest]

> Your absence is always missed you chatty thing you. Hope all is well.

My goodness! Can't a gal enjoy a vacation with hubby & the kid without

feeling I'm AWOL? LOL

, did *you* forget, too?

All is well, ladies. We've just been very busy and I've barely gotten on

line the past few days. Thanks for worrying about me.

We have a few new members - Welcome to you all - and a few people who are

having problems with the list's mail. I *hope* has straightened

everything out for now.

And speaking of , I finally got feedback from the message I sent them

back in February about the missing Recipes folder. Of course, they claim

's servers are working all fine and dandy, that they can find no

problems at all. So, ladies, I really do think that Recipes folder is lost

in cyberspace. If you have any recipes to contribute, or are looking for

some that I already re-uploaded, be sure to check out the Recipes2 folder in

our Files section: 100-plus/files/Recipes2/

Tomorrow we'll be out early again, so I may not even have this machine

turned on until Friday. I hope you're all behaving and making out your

menus, writing in your journals, and drinking that water.

I'm still hoping to see a good review of the Slimaway Everyday

notebook/journal and whether or not it's worth the cost.

And when I get back, I may have a question or 2 about food co-ops, so if

anyone belongs to one, start thinking about the pros and cons and be ready

for some questions about them next week.

And remember, even though it's only 36 degrees here today, Spring start

Friday!!!

See you all soon.

Sue in NJ

enjoying sleeping late for a change

[Guest guest]

Dear Sue,

Wrote you a long e-mail that was sent to your personal address. I was not aware that

you were still so "down." I do hope you find out more about that intravenous Enbrel.

Very interesting.

You amaze me! Though you are having an extremely rough time with so much going

on at work, and your dad being so sick..you still keep your sense of humor. I thought

I was the only one who at times used a "brrom" as a mode of transportation!! hehehehe.

Didn't the MTX help your dad? Maybe the doctor's need to get with something else.

My former GP has severe RA and the Remicade wroked wonders for him. He could

hardly walk or move his fingers anymore, and now he plays golf and gets around

fairly well. He took an early retirement due to the RA.

As for being emotional on the steroids. Although I am on the Methlyprednisolone,

(still a steroid, but a little different tnan Prednisone) I did get very emotional when

at the higher doses. Now that I've been on less than 10mg. (except for times of

ostochondritis hits) I don't think it makes me emotional. There are times I feel the

need to just "come apart" and I think that is because I get so frustrated that the

disease keeps me in this "prison" state so many days.

Love you, tricia

**********************************************************************************

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

Bob looked at the kids after I left and said "you see what that med does to mommy".....he knows that I will cry at the drop of a hat, and I can switch moods like anything. These days, a broom makes a better vehicle than a car for me. Hang in there Liz, you are definitely not alone.

Love,Sue #2

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Hi Everyone It's Dave,

I hope my fellow stilligans are having a decent day and PAIN FREE DAY!!!

I'm not doing well at all myself. I'm in a severe Flare to the extreme. I'm

in excruciating pain which is constant but thank god for the Oxycontin!!!!!!

I just wished The Humira would kick in and I would be able to feel some what

better and I'm going to take my second MTX pillls for the 2nd week on

thursday. I'm just having a very bad Stills day with everything and very

depressed

today. Well I gotta go I wish everyone a anice evening and nite. And be PAIN

FREE!!!!

Sincerely --------D

[Guest guest]

Dave,

Hope you get to feeling better soon. So sorry you are in a bad flare. We are

here for ya

Lynn

Re: Sue

Hi Everyone It's Dave,

I hope my fellow stilligans are having a decent day and PAIN FREE DAY!!!

I'm not doing well at all myself. I'm in a severe Flare to the extreme. I'm

in excruciating pain which is constant but thank god for the Oxycontin!!!!!!

I just wished The Humira would kick in and I would be able to feel some what

better and I'm going to take my second MTX pillls for the 2nd week on

thursday. I'm just having a very bad Stills day with everything and very

depressed

today. Well I gotta go I wish everyone a anice evening and nite. And be PAIN

FREE!!!!

Sincerely --------D

[Guest guest]

Heh Dave sorry to hear ur in an awful flare bud but hopfully the Mtx will kick

in soon.Ive been on mine awhile now but it took about 6 weeks to start helping

(is ur doctor increasing the doseage i beleive that is the normal

procedure).Anyways u hang in there it can only get better and im sure it will.

d.Canada

Re: Sue

Hi Everyone It's Dave,

I hope my fellow stilligans are having a decent day and PAIN FREE DAY!!!

I'm not doing well at all myself. I'm in a severe Flare to the extreme. I'm

in excruciating pain which is constant but thank god for the Oxycontin!!!!!!

I just wished The Humira would kick in and I would be able to feel some what

better and I'm going to take my second MTX pillls for the 2nd week on

thursday. I'm just having a very bad Stills day with everything and very

depressed

today. Well I gotta go I wish everyone a anice evening and nite. And be PAIN

FREE!!!!

Sincerely --------D

[Guest guest]

Marilyn, this is off the cuff, but i think Hover Dam is about one hour

and fifteen min from Vegas. We have been there and it is a great site

to see. I will do some checking about millages and get back with you,

Louise.

Marilyn Hogg wrote:

> My husband and I plan on going to see

> hoover dam and the grand canyon. Does anyone know how far away it is from

> the hotel (in hours)?

[Guest guest]

Marilyn, this is off the cuff, but i think Hover Dam is about one hour

and fifteen min from Vegas. We have been there and it is a great site

to see. I will do some checking about millages and get back with you,

Louise.

Marilyn Hogg wrote:

> My husband and I plan on going to see

> hoover dam and the grand canyon. Does anyone know how far away it is from

> the hotel (in hours)?

[Guest guest]

Hi Margaret,

Karrie is on .10 of the Risperdal at night, with 2.5 of prozac in the

morning. She just had the risperdal increased from .05 last week and the

prozac up from 1.5 to 2.5. about 8 days ago.

My thinking is that she will have to " unlearn " her behaviors and replace the

old ones with new behaviors. After all, these behaviors would almost be

habit after a couple of years, wouldn't they?

I'm told that Karrie strikes out without warning, with no provocation.

My guess is though, that if she is hitting people in the face and biting an

adult's shoulder, they are too close to her, which I've told them many times

she doesn't like anyone too close.

I think they expect her to process faster than she can. Luckily, her OT at

school is one of my friends. The OT backed me up on this at the IEP.

Karrie's instructional aid loves Karrie. She's been great with her, but has

the full responsiblilty of educating Karrie on her shoulders at school. I

brought that up, also at the IEP. Her regular ed teacher has a granddaughter

(one of my patients!!)with ds.

Thanks for your support and prayers. I've had trouble praying lately..

feeling pretty targeted here!

Sue mom to Kate 13 and Karrie 7 w/ds and ??

[Guest guest]

Sue,

My Rochelle did all this and I never believed it was unprovoked. It is

communication!! The school never sent her home for biting. I would nip that one

in the bud right away. I hope you have a behavior specialist on your team.

When you implement all the things you mentioned it will change things around for

you. It did for us.

Good luck, you have a lot of good stuff you are doing. And the suggestions from

the group are great.

Hugs

Diane (mom to Rochelle-ds/asd/celiac and Danny-9 ld/asd/ocd)

>

> From: " Sue Brown " <karriemom@...>

> Date: 2003/08/31 Sun PM 05:36:27 EDT

> < >

> Subject: Re: Sue

>

> I'm told that Karrie strikes out without warning, with no provocation.

My guess is though, that if she is hitting people in the face and biting an

adult's shoulder, they are too close to her, which I've told them many times

she doesn't like anyone too close.>>>

[Guest guest]

My son also sleeps sitting up and bent over in half. He also sleeps on the

floor. He has no sleep issues other than those mentioned. He has always slept

through the night.

He is Rochelle's older brother. Is this sleep position indictive of sleep apnea?

Diane

>

> From: mfroof@...

> Date: 2003/09/01 Mon AM 11:22:07 EDT

>

> Subject: Sue

>

>He use to sleep sitting up and

bent over in half. >>>

[Guest guest]

Diane,

The behavioral specialist on the team is one of the two who said that kids

with ds can't also be dx'd with asd!!

Sue mom to Kate 13 and Karrie 7 w/ds and ??

[Guest guest]

Margaret,

Great idea with the " back off " cards!!

I've got her " break " cards, " I'm working for ____ " cards and visual

schedule ready.

She was supposed to go with her dad this afternoon. I didn't realize how

much I was looking forward to a little down time. He pulled in the drive,

his car quit, he spent 2 hours here waiting for the tow truck, then left

with his car. Good thing is that he got to see Karrie in action, instead of

Mc's behavior. Bad thing is that I ended up having to drag the kids

with me to Wal-Mart and grocery shopping

Thanks for your help!!

Sue mom to Kate 13 and Karrie 7 w/ds and ??

[Guest guest]

At 05:09 PM 9/1/2003 -0500, you wrote:

>The behavioral specialist on the team is one of the two who said that kids

>with ds can't also be dx'd with asd!!

Ours was the school psychologist.

Keep in mind, in many school districts, the psych and the behavior person

dont have to have a lot of specialized training.

Just take your journal articles and plunk them down. What you're doing is

letting them know they're not up-to-date in their reading. That is why the

journal articles hold more weight than Disability Solutions. D/S is a

publication for parents. While it is more helpful to US than journal

articles, the journal articles tell the professionals that this isn't some

hair-brained idea. Especially if the articles come out of reputable journals.

Just remember the statement that prior to 1995 it was believed you couldn't

have a dual diagnosis but that the position was officially changed in 1995.

j