hey everyone

[Guest guest]

:

Honey, don't worry about school right now. You need to concentrate

on getting through the initial stuff of the diagnosis and learning

how to live with it. I'd suggest you contact the school, who ever is

in charge, and let them know what's going on. Perhaps there's a

program that can be suggested to you to make your life a little

easier.

I'm glad you had a chance to see your sister and her family.

Traveling can be very difficult on our bodies, don't push yourself

too much and don't be surprised if you flare once you get home.

Rest, my dear. Everything will fall into place as it should be.

We're all here when you're ready to come back. I'm sending you a

cyber hug (a gentle one) and wish you well.

Take care and be well.

Ellen

[Guest guest]

And , think about how better armed you are just KNOWING what's going

on. Last year you were floundering around in pain, not knowing what was

going on, confused, and likely more than a bit frightened. Now you know that

you have to pace yourself, know that you sometimes will have to ask for

help, and have reason for it and a reason to give to others. I'll bet the

distraction of college (and all those hot girls chasing you!) will distract

you from thinking about your symptoms too. It's going to be great!

*hugs*

> :

>

> Honey, don't worry about school right now. You need to concentrate

> on getting through the initial stuff of the diagnosis and learning

> how to live with it. I'd suggest you contact the school, who ever is

> in charge, and let them know what's going on. Perhaps there's a

> program that can be suggested to you to make your life a little

> easier.

>

> I'm glad you had a chance to see your sister and her family.

> Traveling can be very difficult on our bodies, don't push yourself

> too much and don't be surprised if you flare once you get home.

> Rest, my dear. Everything will fall into place as it should be.

>

> We're all here when you're ready to come back. I'm sending you a

> cyber hug (a gentle one) and wish you well.

>

> Take care and be well.

>

> Ellen

>

>

>

[Guest guest]

,,

Joan and I flew down to AZ last Nov and I started to flare a little.. Cabin

presure from the plane ride, 3 days to snap out of it .. you'll have the slows

the whole time there..

on the way back 4 days to recover, things will go very slow for you.....at

least thats what happened to me..sorry man bummer

Alan

Ps i'm in a fever flare and out off of work for a month..

[Guest guest]

 do not forget the biggest deference this year to last in your schooling and

that is this year you do have a DX and because of that make a call to your

councler and talk my man talk to them let them know what you need and what you

limits are. you also need to plan for lots of rest so no chasing skirts and

party tell ya yack LOL any hoot it can been done may be a bit slower or with

adjustments may be some on line and some normal classes who knows . I have a

nice who is going to UC Chico here in calif and she lives over 160 miles away

but she dose not travel for school at all as all her classes are on line . now

even if there not all on line by taking as many as you can that way it should

help easy the load a bit and if you let them know and a schedule can be worked

out that say gives you may be a bit more time for papers or the ability to take

a test later because of health things like that it can be done . the hard part

for me when i first came down

with stills was learning how much i could do and or how hard i could push and

to this day 8 years down the road i still have to adjust and readjust now and

then . my plan would be work with getting stills as under control as you can and

may be even take a semester off then go back then next with an idea of what you

can handle or talk with them now and see what they can do to accommodate you but

n o matter what never give up a dream that is doable and achievable because then

you will always have a what if . I wouod rather try my best then if i have to I

can say well I gave it my all and now lets move on  now take this as you want as

after all I am over 30 and ya know ya can not trust us LOL

 my best and you will find what works for you just give it time .

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

Hey everyone

Sorry I haven't been real active in responding to people. Don't worry,

I do read them and keep y'all in mind! =)

I'm scared about college, though. My college is three hours away from

my Parent's home (where I stay on breaks and in the summertime).

Especially if I start physical therapy, I don't know if I can handle

the distance and energy. Last year I missed many classes due to

fatigue and pain.

..

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

[Guest guest]

, I'm over 30 and you can trust me... ignore Marty and chase skirts,

it will do you good! LOL

>

> do not forget the biggest deference this year to last in your schooling

> and that is this year you do have a DX and because of that make a call to

> your councler and talk my man talk to them let them know what you need and

> what you limits are. you also need to plan for lots of rest so no chasing

> skirts and party tell ya yack LOL any hoot it can been done may be a bit

> slower or with adjustments may be some on line and some normal classes who

> knows . I have a nice who is going to UC Chico here in calif and she lives

> over 160 miles away but she dose not travel for school at all as all her

> classes are on line . now even if there not all on line by taking as many as

> you can that way it should help easy the load a bit and if you let them know

> and a schedule can be worked out that say gives you may be a bit more time

> for papers or the ability to take a test later because of health things like

> that it can be done . the hard part for me when i first came down

> with stills was learning how much i could do and or how hard i could push

> and to this day 8 years down the road i still have to adjust and readjust

> now and then . my plan would be work with getting stills as under control as

> you can and may be even take a semester off then go back then next with an

> idea of what you can handle or talk with them now and see what they can do

> to accommodate you but n o matter what never give up a dream that is doable

> and achievable because then you will always have a what if . I wouod rather

> try my best then if i have to I can say well I gave it my all and now lets

> move on now take this as you want as after all I am over 30 and ya know ya

> can not trust us LOL

> my best and you will find what works for you just give it time .

>

> the rednecks

> Marty & G.

> the redneck's my space http://www.myspace.com/martyg58

>

> Stills ; An illness I know to well!

> To learn about Stills http://www.stillsdisease.org/stills_info

> If you find yourself in a hole, the first thing to do is stop diggin'.

>

> In the old days a man who saved money was a miser; nowadays he's a wonder.

> ~Author Unknown

>

>

> Hey everyone

>

> Sorry I haven't been real active in responding to people. Don't worry,

> I do read them and keep y'all in mind! =)

>

> I'm scared about college, though. My college is three hours away from

> my Parent's home (where I stay on breaks and in the summertime).

> Especially if I start physical therapy, I don't know if I can handle

> the distance and energy. Last year I missed many classes due to

> fatigue and pain.

> .

>

> " Taking my gun away because I might shoot someone is like cutting my tongue

> out because I might yell `Fire!' in a crowded theater. "

> -- Venetoklis

>

> a government and its agents are under no general duty to provide public

> services, such as police protection, to any particular individual citizen...

>

> -- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

>

>

[Guest guest]

Thanks everyone for the advice, and LOL about chasing skirts. I'll see if I

have the energy =P

I'll talk to my advisor ASAP, maybe even over the phone (although I go back

to school in a few weeks). I'll spend this next semester 1.) with a lesser

load, 2.) trying to test how the schoolwork will work with my Still's, and

3.) If I ultimately need to move closer back home with my parents. If it's

too taxing on me, I'll switch to either online courses or the technical

college up in Madison (which is only about 30 minutes away from home instead

of 3 hours!). i'm promising myself that if it's too much for me to handle

that'll I'll get out of there.

I'm just bummed that I'd gotten my life back together from a lot of

deep-seated family problems for most of my life, and now that I'd gone to a

good college aiming for (at least for now) Poli Sci, I have to move

everything around. *Originally* I was going into a Music Major, but my

wrists hurt everytime I even think about playing the piano =\

But now that I do know that most of the problems were stemmed from Still's,

I'll be able to handle, or at least deal with it instead of just being lost

and confused.

Thanks for all the advice, guys! =D

--

-

[Guest guest]

,

I too played an instrument. I started playing violin in grade school very

early on and then as I got older concerts. I was unable to play when I got

Still's and kept my violin under my bed for years. Finally 15 years later I

sold it to a friend for her son that needed one. They were a wonderfully

gifted musical family and could not afford much and I felt it should be used

and appreciated. Well, my father gifted me one several years ago so that I

could play sometimes. I cannot play anything close to the capacity of years

gone past. The dexterity is just simply not there, but it is a very special

gift and one I treasure and on occasion I rosin up my bow and slowly play a

haunting melody. Thank you for reminding me that it is there. It's so easy

for me to get distracted and splintered in so many directions at once in my

life. I am a true Gemini after all, lol.

I hope your endeavors are successful and that arrangements can be made for

you to continue your classes as you wish.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Rickycat

Sent: Thursday, August 14, 2008 6:59 AM

To: Stillsdisease

Subject: Re: Hey everyone

Thanks everyone for the advice, and LOL about chasing skirts. I'll see if I

have the energy =P

I'll talk to my advisor ASAP, maybe even over the phone (although I go back

to school in a few weeks). I'll spend this next semester 1.) with a lesser

load, 2.) trying to test how the schoolwork will work with my Still's, and

3.) If I ultimately need to move closer back home with my parents. If it's

too taxing on me, I'll switch to either online courses or the technical

college up in Madison (which is only about 30 minutes away from home instead

of 3 hours!). i'm promising myself that if it's too much for me to handle

that'll I'll get out of there.

I'm just bummed that I'd gotten my life back together from a lot of

deep-seated family problems for most of my life, and now that I'd gone to a

good college aiming for (at least for now) Poli Sci, I have to move

everything around. *Originally* I was going into a Music Major, but my

wrists hurt everytime I even think about playing the piano =\

But now that I do know that most of the problems were stemmed from Still's,

I'll be able to handle, or at least deal with it instead of just being lost

and confused.

Thanks for all the advice, guys! =D

--

-

[Guest guest]

a Music Major, EH?

I just picked up my guitar last evening after about 5 weeks. Not too

bad except for some of the more intense fingering. Some of them just

made a clunking sound. Initially, the hard part is becuase my

calluses are gone. But, of course, as usual, and I should have known

better, I overdid a bit for the first effort and the wrists and

fingers are complaining loudly this morning.

, what I am saying here is, as you start to feel better, do not

give up on something you love to do. You may need to adapt and take

it slowly, but try to stay engaged in as much as you can and do not

be to hypercritical if your efforts are not up to your previous

abilities.

Tom

>

> Thanks everyone for the advice, and LOL about chasing skirts.

>

> I'm just bummed that I'd gotten my life back together from a lot of

> deep-seated family problems for most of my life, and now that I'd

gone to a

> good college aiming for (at least for now) Poli Sci, I have to move

> everything around. *Originally* I was going into a Music Major, but

my

> wrists hurt everytime I even think about playing the piano =\

>

> But now that I do know that most of the problems were stemmed from

Still's,

> I'll be able to handle, or at least deal with it instead of just

being lost

> and confused.

>

> Thanks for all the advice, guys! =D

>

> --

> -

>

>

>

[Guest guest]

, I agree with Tom and . I love ceramics and pottery...though I've

never gotten the hang of wheel throwing. I just love the feel of the clay in my

hands and molding it and glazsing it etc. I haven't touched it for years...and

I've only had Still's for 2 years. My wrists and hands hurt like everyone

elses, but long story short I decided they're probably not going to get better

than they are now, so if I'm going to do it...now's the time. I'm taking wheel

throwing classes and LOVING IT! So do it ! It may even be good therapy.

And while you're doing it, It probably won't even hurt. I haven't noticed the

pain at the time, I guess cuz' I'm having so much fun. Tonight's my 3rd

class...so I must go change clothes. I hope you'll reconsider your music

choices...it will also work to keep your mind nimble(boy that word looks weird).

in TX

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

[Guest guest]

 I have a bunch of relatives who have gone to collage in Madison so do not over

look the collage there . so did you play classical of modern ? I used to attempt

to play the cello , and the stand up bass . growing up it was sis on the ivory

keyboard dad on the guitar  my other sis singing and every one wearing ear plugs

LOL

 any hoot what ever you do get set up for the extra help right away as it may be

just the bit of extra you need I know my son has a learning disability like my

self and even he was surprised at how much more collage would do for him then

high school did

 so good luck and let us know

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

[Guest guest]

I mostly played Bach's Preludes and Fugues. My Music Professors kept trying

to get me into Chopin's Nocturnes and the whole Romantic period, but it

bored the heck outta me! LOL. I started playing the piano only a few years

ago, but I already have an hour-long solo recital and a 5k music scholarship

under my belt. I'll still try to keep up when I have my good days, because

playing the piano is truly therapeutic to me. I just realized I couldn't

keep up with the stress of several hours' practice every day.

So I've been pretty stubborn. I'm on the fringe of a flare-up. The rash has

been coming back and my jaw and fingers keep swelling (couldn't chew any

food or close my mouth a few nights ago), but I still managed to go bowling

with my brother-in-law and Sister. I figure I haven't seen them in over a

year, so the flareup will just have to wait, LOL. Now that I'm back home,

though, the fatigue's really hit. I slept all of Sunday (woke up once, and

only for about 5 minutes before saying 'forget this' and went back to

sleep).

My rebellious side even got a tattoo while I was down in Phoenix. Just some

Brother-Sister bonding time ;-P

--

-

[Guest guest]

Hey ,

I pulled out my 12 string guitar last week and actually played it each

day for 4 days. Then I sat in with the group from our church.

I am trying to build up my calluses to at least relieve that bit of

pain from the equation. Then I will only worry about the finger and

wrist joint pain. Funny how I really did not feel the pain while I was

at it, but afterwards, out came the ice packs. I went a little bonkers

on Bethovan's " Ode to Joy " . It really moves on the guitar and has some

good changes that exersizes the fingers on both hands. My problem is

that as I got back in the swing, I kept increasing the tempo until I

broke into a sweat.

Enjoy yourself.

Tom

>

> I mostly played Bach's Preludes and Fugues. My Music Professors kept

trying

> to get me into Chopin's Nocturnes and the whole Romantic period, but

it

> bored the heck outta me!

>

> My rebellious side even got a tattoo while I was down in Phoenix.

Just some

> Brother-Sister bonding time ;-P

>

>

> --

> -

>

>

>

[Guest guest]

I do love listening to Bach but after a while I found it all rather

sounding the same. Chopin was interesting but I also understand what

you're saying about it being boring. I've found very few classical

composers to call my " favorite " but over all I rather enjoy classical

music. Varitions on a theme (they all did those), the stirring

sounds of the orchestra...OK, I'll have to stop there.

My favorite instrument, other than voice, is piano. I haven't

touched one in 18 years (since I've been married) because we've never

had room for one and we moved a great deal. We've finally bought a

townhouse about 4 years ago so I'm not moving anymore, at leas not

that I know of. Anyway, I've given up the instruments completely.

No more piano, piccolo, clarinet, flute, oboe...you get the idea. I

miss it sometimes but at least I can still sing.

So what kind of tattoo did you get?

Take care and be well.

Ellen

[Guest guest]

Yeah, Bach tended to recycle a lot of his music. Although he wrote some

really fun pieces to play. I love playing Stravinsky, but it's a pain in the

butt! I don't think I'll ever be able to get the Rite of Spring down! He was

a sadistic man, LOL.

I got the Trinity symbol on the inner part of my forearm. When I recharge my

camera, I'll upload a pic and link it.

--

-

[Guest guest]

Oddly enough, I was listening to Rodeo by Copeland yesterday during

the storm. It had struck me that classical type of music is still

being written in harmonics rather than atonal or in mode. Of course

Copeland has passed away (the after he retired) but I had

completely forgotten about him.

I can't wait to see this tattoo of yours, I'm not quite sure what a

trinity looks like. My son want to get a tattoo but I won't allow

it. He's only 15 years old.

Take care and be well.

Ellen

[Guest guest]

Here's the link to my tattoo:

http://i7.photobucket.com/albums/y262/Rickycat/Tattoo.jpg

I already want another one =D

--

-

[Guest guest]

Nice Tat. What does it mean? And what's the new one?

Take care and be well.

Ellen

[Guest guest]

Ow ow ow! What a painful place to have it! Very nice though. Careful

going down that 'I need another one!' road... my sister just got a little

sunflower on her ankle, and that's what's she's saying now... " Ooo.. now I

want THIS one! " lol

20 years ago I got a small rose on my hipbone... I still haven't gotten over

the urge to paint myself again. I want an oak leaf (that apparently stands

for 'new beginnings') with a ladybug on top. The lady bug is because I may

be soft inside, but I'm a tough lady.

[Guest guest]

Religiously the Trinity represents the Father, Son, and Holy Ghost. I was

raised in an Episcopal congregation. While I'm not religious today, the

symbol still holds a lot of meaning for me and my Sister. It reminds me of

where I came from, as well as reminding me of the unity and closeness of my

family.

For the new one, I want it to be the Tree of Life. Here's a link:

http://i7.photobucket.com/albums/y262/Rickycat/Edit.jpg

If you can't tell, I'm a big fan of Celtic knot-work, LOL. I love the

intricate patterns and designs.

I was pretty proud of myself pain-threshold-wise. The most painful part was

the initial outline. Every time the pain was more intense I just reminded

myself " Psh, this is a pinprick compared to my big flareup. I can deal with

this easily. " And I managed not to wince or move. Still's helps with that,

at least for me =P

I'm broke, now, so I'll be waiting quite a while before putting tattoo #2

on. It'll be on my upper left arm.

Tattoos are so addicting!

--

-

[Guest guest]

darling,

Just so you know the Tree of Life has a great deal to do with the

Jewish religion and tradition. As the song goes:

It is the Tree of Life to them that hold fast to it and all of it's

supporters are happy, Shalom, shalom, shalom, shalom. In case you

didn't know Shalom is Hebrew and really means peace but also means

hello, goodbye - you get the idea. We use Shalom for a lot of things.

Anyway, we have a tree of life in our Temple again the outside of

wall of the Sanctuary. As a matter of fact we bought a leaf to

celebrate our son's Bar Mitzvah. I've also bought a " rock " for a

rememberance of my Dad, he passed away five months ago.

Just thought I'd let you know. Good choice for a tattoo. Take care

and be well.

Ellen

[Guest guest]

Oh wow, that's fascinating. Thanks for the information; I love learning

about these things =)

I was actually going to study Hebrew this coming semester, but switched to

Russian. Someday I'll learn Hebrew. I love languages.

--

-

[Guest guest]

ok, this friday that passed i went to go see a dan doctor. the first

thing she recommended was the gf/cf diet. which seems very hard because

my son eats nothing but chips and stuff. How should i get started and

does this diet really work?

oh, any one with experience from dan doctors, please need advice.

[Guest guest]

>

> ok, this friday that passed i went to go see a dan doctor. the first

> thing she recommended was the gf/cf diet. which seems very hard

because my son eats nothing but chips and stuff. How should i get

started and does this diet really work?

>

> oh, any one with experience from dan doctors, please need advice.

This all depends on your child and the physician.

I usually get approached by other parents who I know when asked about

the diet as they are aware that my son is under the GFCF diet. I would

highly recommend it as I have seen some wonderful results with my son

under the autism spectrum and my family experiences but everyone is

unique in their own challenging way.

Parents really have to do homework and parents must feel ready to

tackle this challenge.

Some DAN! physicians require their patients to be on the GFCF diet

before they will see someone in their practice. Other physicians feel

it is really important to test for celiac or any other gut issues

before starting the diet so an accurate diagnosis can be determined.

It is important to do this diet correctly because any small infraction

can make the diet ineffective.

Will the physician be working with you to learn more about the diet GFCF?

Many recommend this diet as a starting point to most diets.

GFCF improves symptoms of constipation and diarrhea. It also reduces

many cognitive and behavioral symptoms for many children.

There is so much to share.

I am not a professional just jotting down what I have on my notes

throughout my ongoing learning the ropes here on this journey.

Start with one at a time:

* Try casein-free for three weeks.

* Then remove gluten and continue both for three months.

Substitute same foods child like with GF/CF options. For example, if

he will only eat waffles, every morning, buy rice flour waffles.

If possible, work with a professional such as a physician,

naturopathic doctor, or nutrition consultant who understands gluten

and casein-free diets.

Many of us parents report our individuals will expand their very

narrow food choices once the addicting opiates (gluten and casein).

Digestion is often one of the biggest areas to improve-constipation is

eliminated when dairy is removed, diarrhea goes away when gluten is

removed, gas and pain are reduced or eliminated.

Are you able to travel to SA out to the Any Baby Can facility on

Tuesday the 30th of Sept.?

Session is on GF/CF foods, 6:00pm-6:30pm Dinner, 6:30p.m.-8:00p.m.

Speaker.

Contact them to see if there are any available slots at ,

to reserve a spot for training and for childcare.

If unable and interested on consulting with Rita from The Little

Aussie Bakery, she could be reached at-

http://www.thelittleaussiebakery.com/

If you are able to get away to Austin -

Need to R.S.V.P.

Contact-

Perrin Shafer

Administrative Assistant

Thoughtful House Center for Children

Phone:

Fax:

perrin.s@...

http://www.thoughtfulhouse.org/

Wednesday, October 8, 12:00 � " 1:00 pm

Nutritional Intervention

Presenter: Kirsten Bell, RD, Nutrition Clinic at Thoughtful House

Kirsten discusses the fundamentals of dietary and nutritional

intervention in autism and related disorders.

Hope something helps.

Irma

[Guest guest]

>

> ok, this friday that passed i went to go see a dan doctor. the first

> thing she recommended was the gf/cf diet. which seems very hard because

> my son eats nothing but chips and stuff. How should i get started and

> does this diet really work?

>

> oh, any one with experience from dan doctors, please need advice.

I don't have personal experience, but I know from being on this list

that you can get tests done to determine what your child actually has

issues with instead of just guessing. I wouldn't be willing to put my

child on such an extreme diet without knowing whether it was really

needed, myself. So, my advice is to let the list know where you are

located and see if someone can recommend a doctor in your area.

[Guest guest]

This is where we start all our patients as well. Many children make

huge strides with this diet alone. In fact, we've had a recovery using

GFCF, MB12, and yeast treatment. Unfortunately recovery isn't that

easy for most kids, including my son. However it is worth trying and

you can get help from www.tacanow.org - search for gfcf or gluten free

casein free.

>

> ok, this friday that passed i went to go see a dan doctor. the first

> thing she recommended was the gf/cf diet. which seems very hard

because

> my son eats nothing but chips and stuff. How should i get started and

> does this diet really work?

>

> oh, any one with experience from dan doctors, please need advice.

>