New member

Posted May 16, 2008 · May 16, 2008

Welcome, . Like the others, sorry you're here and glad you

found us! This is a hard disease to understand but the members here

are great about sharing their stories, experiences, providing advice on

managing day-to-day life, etc.

Hope you find some peace soon,

Atlanta, GA

Posted May 16, 2008 · May 16, 2008

Welcome, . Like the others, sorry you're here and glad you

found us! This is a hard disease to understand but the members here

are great about sharing their stories, experiences, providing advice on

managing day-to-day life, etc.

Hope you find some peace soon,

Atlanta, GA

Posted May 16, 2008 · May 16, 2008

Hi Nadine. Welcome. I think you'll find this group to be very

informative as well as a great asset in the compassion department.

Hope your doctors get you pointed in the right direction.

Re: your question about med combinations. My experience has been that

this disease does not respect our request that one pill cures

all. ) Really, it seems like we all have different things that work

for us with some similar underlying treatments. Best advice? Get a

GREAT doctor who will work with you to find out what your body responds

to best and stick with it (even on your good days when you don't think

you need to).

Atlanta, GA

Posted May 16, 2008 · May 16, 2008

Hi Nadine. Welcome. I think you'll find this group to be very

informative as well as a great asset in the compassion department.

Hope your doctors get you pointed in the right direction.

Re: your question about med combinations. My experience has been that

this disease does not respect our request that one pill cures

all. ) Really, it seems like we all have different things that work

for us with some similar underlying treatments. Best advice? Get a

GREAT doctor who will work with you to find out what your body responds

to best and stick with it (even on your good days when you don't think

you need to).

Atlanta, GA

Posted May 17, 2008 · May 17, 2008

Thank You

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Posted May 17, 2008 · May 17, 2008

Philip,

I am sorry you are ill.

I am 28 (as of last week) and as of October 15, I will have fought this dragon

for 4 years. I would describe my current condition, but I am afraid it would

depress you, as I am at the worst it has ever been right now.

Hang in there and know we are here for you. Join in as little or as much as you

want.

Take Care,

Fayette, OH

Posted May 17, 2008 · May 17, 2008

Philip,

I am sorry you are ill.

I am 28 (as of last week) and as of October 15, I will have fought this dragon

for 4 years. I would describe my current condition, but I am afraid it would

depress you, as I am at the worst it has ever been right now.

Hang in there and know we are here for you. Join in as little or as much as you

want.

Take Care,

Fayette, OH

Posted May 17, 2008 · May 17, 2008

Philip,

I am sorry you are ill.

I am 28 (as of last week) and as of October 15, I will have fought this dragon

for 4 years. I would describe my current condition, but I am afraid it would

depress you, as I am at the worst it has ever been right now.

Hang in there and know we are here for you. Join in as little or as much as you

want.

Take Care,

Fayette, OH

Posted June 29, 2008 · June 29, 2008

Hello, ,Don't be scared. It will be worthy once you try the treatment. It might cure your HCV. But just remember, it might come with a lot of side effects. But I told myself, I was just like taking the tylenol when I had a cold. The difference is the treatment time is longer. I remembered the day I decided to start the treatment, I felt very scared. But remember to share what you feel with your family or with your close friends. They will be the best listener and supporter to you. Also start to drink a lot of water, remember no coffee and tea. I remembered the first shot I took, the nurse suggest me take the tylenol before I took the shot. She said it might ease the side effect. So I did it the first 2 shots. But after that, I encourage myself not to depend on the tylenol. Here's my experience. I did the shot on Thursday's night.

So I can go to bed right after the shot. Then the next day, Friday normally is easy at work (if you have a job). Saturday and Sunday will be good for you to take a break.Good luck with everything. :)GabySubject: new memberTo: HepatitisCSupportGroupForDummies Date: Sunday, June 29, 2008, 10:39 AM

Hello everyone. I am new to the group and was just diagnosed three days ago. I have been very scared and did not know what to do so I am grateful the group is here to help. Thanks again

Posted July 15, 2008 · July 15, 2008

Hi everyone,

My name is Lindsey, my 8 year old son was diagnosed with Autism last

year (not for lack of me trying). I am a single mother with three

kids and I go to college as a Criminal Justice student.

Trae (my son) is high functioning. He can speak (mostly

inappropriate) run, ride a bike, play computer games.

What he can't do is transition or anything he doesn't want to do.

Trae has meltdowns that last for four hours at a time. He is often

angry and the only words I hear from him all day long is " I hate you "

and (thanks to an evaluation) " I'll just kill myself " . When he does

have a meltdown is when he can't verbalize what it is that has gotten

him so worked up, which just frustrates him even more. Trae has no

expectations around the house, and there are two angry sisters here I

can barely keep in check.

I love my son desperately. I was at the end of the line when I found

out about Autism service dogs. We are currently having one trained by

an organization. Although a lot of money, well worth it for my son to

have a chance.

Well, that was a little about me. I can't wait to hear everyone

else's stories.

Thanks for letting me join,

Lindsey

Posted July 24, 2008 · July 24, 2008

Dear Lindsey,

Would you please say a bit more about the autism service dogs?

Thanks,

Francine

In a message dated 7/23/2008 11:44:43 P.M. Eastern Daylight Time, llmorrow75@... writes:

Hi everyone,My name is Lindsey, my 8 year old son was diagnosed with Autism last year (not for lack of me trying). I am a single mother with three kids and I go to college as a Criminal Justice student.Trae (my son) is high functioning. He can speak (mostly inappropriate) run, ride a bike, play computer games.What he can't do is transition or anything he doesn't want to do. Trae has meltdowns that last for four hours at a time. He is often angry and the only words I hear from him all day long is "I hate you" and (thanks to an evaluation) "I'll just kill myself". When he does have a meltdown is when he can't verbalize what it is that has gotten him so worked up, which just frustrates him even more. Trae has no expectations around the house, and there are two angry sisters here I can barely keep in check.I love my son desperately. I was at the end of the line when I found out about Autism service dogs. We are currently having one trained by an organization. Although a lot of money, well worth it for my son to have a chance.Well, that was a little about me. I can't wait to hear everyone else's stories.Thanks for letting me join,Lindsey Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today.

Posted August 15, 2008 · August 15, 2008

Welcome to the group, we are always happy to have new members!

You will find lots of help and support here on this disscussion board. Some of

use have autism and there are parents as well as profesionals here...all doing

the same thing. Helping each other.

http://speakup.today.com

Subject: New member

To: Autism_in_Girls

Date: Friday, August 15, 2008, 10:04 AM

Hi there, my name is Jennie and I am new here...I am a proud mama of 3 year old

girl, Kaylee, with HFA, and (NT) 17 months, and Abigail 4 mo. (3 kids 3

years and younger!) I am glad to be here talking and learning with others who

deal with autism in girls. Thank you again for having me!

Posted August 15, 2008 · August 15, 2008

Welcome to the group, we are always happy to have new members!

You will find lots of help and support here on this disscussion board. Some of

use have autism and there are parents as well as profesionals here...all doing

the same thing. Helping each other.

http://speakup.today.com

Subject: New member

To: Autism_in_Girls

Date: Friday, August 15, 2008, 10:04 AM

Hi there, my name is Jennie and I am new here...I am a proud mama of 3 year old

girl, Kaylee, with HFA, and (NT) 17 months, and Abigail 4 mo. (3 kids 3

years and younger!) I am glad to be here talking and learning with others who

deal with autism in girls. Thank you again for having me!

Posted August 15, 2008 · August 15, 2008

In a message dated 8/15/08 1:05:22 P.M. Eastern Daylight Time,

jlhank80@... writes:

my name is Jennie and I am new here

welcome to the group im eric my wife is pennie and our hfa daughter abby is

11 and we live in michigan.

eric abbys dad

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Posted August 15, 2008 · August 15, 2008

In a message dated 8/15/08 1:05:22 P.M. Eastern Daylight Time,

jlhank80@... writes:

my name is Jennie and I am new here

welcome to the group im eric my wife is pennie and our hfa daughter abby is

11 and we live in michigan.

eric abbys dad

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.aol.com/cars-Volkswagen-Jetta-2009/expert-review?ncid=aolaut000300\

00000007 )

Posted August 15, 2008 · August 15, 2008

In a message dated 8/15/08 1:05:22 P.M. Eastern Daylight Time,

jlhank80@... writes:

my name is Jennie and I am new here

welcome to the group im eric my wife is pennie and our hfa daughter abby is

11 and we live in michigan.

eric abbys dad

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.aol.com/cars-Volkswagen-Jetta-2009/expert-review?ncid=aolaut000300\

00000007 )

Posted September 11, 2008 · September 11, 2008

Norman sen wrote:

> Hi,

> My name is Norm. I am an American living in Colombia

> for almost 8 years now. I entered the perfume business by accident.

> Tourism fell to nothing here after 9/11 and never really recovered. We

> ran a bed and breakfast.

Hi Norm....

Welcome to the Natural Perfumery List...

I think you'll find it a friendly, informative place...with a lot of

resources...

> My email, Texas Dog, is actually because of a hot dog

> served on Texas Toast.... delicious.

The Texas Dog sounds like a hot dogger's dream.....

I only periodically become afflicted with hot dog urge...

And then that's the time there is no so delightful culinary delight....

Not even pizza.....

> It is about time that we put our creativity to work in our business as

> well, and the more natural the better.

> So with much rambling.... there´s my life story....

> or at least a few chapters.

> Now having learned what a tincture is, I may have been off coarse.

> I had intended to filter the odorous alcohol and allow it to evaporate,

> hoping to end up with an oil or absolute. Is this possible?

Well, definitely filter your concoction...and you can increase it's

strength by then fresh charging with new source botanical, filtering

again...And do it again, etc. until the alcohol can hold no more....

This works best with very high proof/percentage ethanol, i.e. the type

you can drink....

I'm talking 190 proof/95% ethanol strength, which is pretty hard to

drink in that strength, though...<G>.......

As far as I know, you can only get to a true absolute using ethanol

extraction, with vanilla beans...and to get there you need vacuum

systems and precise temp controls....

But you can get to a very strong and odorous tincture.....and maybe get

some of the alcohol evaporated off...

On the other hand, if you're doing alcohol based perfumery, having a

stinky tincture in high proof alcohol, is a convenient thing...

And....ya won't get an essential oil....In most cases, other than the

citrus EOs, that is a product of a steam or hydro distillation....

Anyway, once again, welcome to the NP list....

--

W. Bourbonais

L'Hermite Aromatique

A.J.P. (GIA)

Posted September 11, 2008 · September 11, 2008

Norman sen wrote:

> Hi,

> My name is Norm. I am an American living in Colombia

> for almost 8 years now. I entered the perfume business by accident.

> Tourism fell to nothing here after 9/11 and never really recovered. We

> ran a bed and breakfast.

Hi Norm....

Welcome to the Natural Perfumery List...

I think you'll find it a friendly, informative place...with a lot of

resources...

> My email, Texas Dog, is actually because of a hot dog

> served on Texas Toast.... delicious.

The Texas Dog sounds like a hot dogger's dream.....

I only periodically become afflicted with hot dog urge...

And then that's the time there is no so delightful culinary delight....

Not even pizza.....

> It is about time that we put our creativity to work in our business as

> well, and the more natural the better.

> So with much rambling.... there´s my life story....

> or at least a few chapters.

> Now having learned what a tincture is, I may have been off coarse.

> I had intended to filter the odorous alcohol and allow it to evaporate,

> hoping to end up with an oil or absolute. Is this possible?

Well, definitely filter your concoction...and you can increase it's

strength by then fresh charging with new source botanical, filtering

again...And do it again, etc. until the alcohol can hold no more....

This works best with very high proof/percentage ethanol, i.e. the type

you can drink....

I'm talking 190 proof/95% ethanol strength, which is pretty hard to

drink in that strength, though...<G>.......

As far as I know, you can only get to a true absolute using ethanol

extraction, with vanilla beans...and to get there you need vacuum

systems and precise temp controls....

But you can get to a very strong and odorous tincture.....and maybe get

some of the alcohol evaporated off...

On the other hand, if you're doing alcohol based perfumery, having a

stinky tincture in high proof alcohol, is a convenient thing...

And....ya won't get an essential oil....In most cases, other than the

citrus EOs, that is a product of a steam or hydro distillation....

Anyway, once again, welcome to the NP list....

--

W. Bourbonais

L'Hermite Aromatique

A.J.P. (GIA)

Posted October 18, 2008 · October 18, 2008

> I know many of you have probably answered this question a hundred

> times for new members but since I have NO experience, what is the

> best book or option for getting started? I looked over the book list

> in the files but am a bit overwhelmed as to where to start.

Can't go wrong with Mandy Aftel's Essence & Alchemy or Scents &

Sensibilities.

Posted October 21, 2008 · October 21, 2008

Welcome to the group Darren (I'm guessing your name from your email ).

Sorry about the Stills, but glad you found the group. Everyone is so much

support..

I was diagnosed this year as well, but we have people here who have had

Stills for decades... and you and I are lucky in that it was diagnosed so

quickly. Some of the members were sick for years (and some told they were

just crazy!).

There are a few UK members in here that maybe can help you out... and have

you seen the website at http://www.stillsdisease.org/? I believe there's a

list of doctors on there as well.

Here's to pain free days for you.

> Hi all I am a new member. I was diagnosed with AOSD in May this year.

> It started with jaw pain. Then came the constant temperature. I

> spent the following two weeks with the temp and with flu like

> symptoms like pains in my legs and getting tired. That weekend I

> spent most of it sleeping. On the Monday I went back to work. I'm an

> instructor and I was under extreme stress at the time. In the

> afternoon I had to go home early and rest. The following day I went

> to see the doctor and he couldn't find anything that would give me

> the temp. (Since the start of the temp I had been on paracetamol).

> The following day I went to have bloods done. That night I went to

> sleep as normal. A few hours later I woke up with my legs in

> excruciating pain. A burning sensation. My wife took me to A & E and

> was seen by the house doc. He could see that in my blood results

> there was an infection. He gave me pain killing injections and

> prescribed antibiotics. Home for rest.

> On Saturday morning I woke up again with extreme pain in my legs.

> Back to A & E. Doc saw me and had my bloods again. Infection had shot

> up. He then got onto the duty consultant. He could find nothing wrong

> with me. He admitted me into hosp and put me in isolation. This time

> the pains did not go away. I found it difficult to walk but I still

> had strength in them. On Sunday again I woke up during the night in

> excruciating pain. They gave me something, slept till midday woke up

> with the consultants visit when he changed my meds. Monday continued

> in pain. Tests started. Kept in isolation for a few days. One day

> felt ok another felt worse. All the time with the temperature. All

> the time with pains in my legs.

> A week and a half later they still had no clue what I had but I could

> feel I was getting worse. I had lost weight and legs still hurt like

> crazy. I had x-rays, scans, MRI's but they could not find anything.

> Wednesday. Wednesday woke up with extreme pain in my legs and now

> arms. Could hardly move my arms. Manage to hit the nurse assist

> button. They kept me in pain till the consultant came to see me two

> hours later to admit that I was getting worse!! But promised to get

> me well. Second consultant came to see me. He was the one who

> recommended starting the predniserone 30 mg daily. That day I was

> given some magical pills and injections that left me sedated till the

> following morning. Consultant again saw me and told me to drink lots

> of water to clean the system then they gave me the three strongest

> antibiotics available plus an assortment of pills. 14 pills a day.

> Still had temp spikes. Lost more weight. Rumy saw me was the first to

> check for rash.

> A week later consultant visited told me he thought it was AOSD. He

> had checked for everything in the medical books and all that was left

> was AOSD. Discharged. 3 weeks two days in hosp. Consultant told me

> to walk to get some exercise. Hips would hurt then knees then ankles

> then knees............ lost my right eyesight for a few minutes. That

> was scary. Eyes checked. Nothing wrong found.

> I continued having temp for two extra months in the mornings and

> evenings. Slowly the evening temps faded away eventually so did the

> morning ones. I had to lie down and have a rest every time temp came

> on. Only once did I see the rash on my legs. Wife confirmed i also

> had some on my back. Started to recover and put on weight and in

> September started to work.

> Am now down to 5mg of predniserone, 50mg x 2 azathioprine, 100mg x 2

> celebrex and 20mg omeprazole. Paracetamol when required.

> Legs hurt very mildly now , mostly muscles sometime like the burning

> sensation, fingers hurt mildly, wrists crack and creak a bit, strong

> stabbing like pain inside armpits, arm muscles hurt mildly as does

> right shoulder blade.

> Sorry all for this been such a long winded post. I apologise. But I

> had to write all this down. (I still left some bits out!!!!)

> If there are any UK members amongst anyone in this group could you

> please send me information on hospitals and rheumatologists who treat

> AOSD in case I get referred the UK in the near future.

>

Posted October 21, 2008 · October 21, 2008