New Member

[Guest guest]

Hi Judy,

Welcome to Stilligans Island, this is a great place to learn about

Stills Disease and meet the most wonderful people! Louise, from the

Rocky Mountains.

[Guest guest]

-Hi Judy welcome to the group..My name is Pat and Im from Ma, I was

dx in 1988, but just joined this group and everyone is soooo nice and

the amount of information is wonderful...Im sorry your in pain right

now, hopefully the Remicade will kick in..I started on it in October,

and I feel it has just started to work a little...the fatigue is a

little better, I worked 3 out of 5 days this week, which is better

than none, fevers still come and go, joint pain up a little this week

so I will try it a little longer. The fatigue is

unbelieveable..sometimes I cant keep my eyes open because they are so

heavy....I get remicade every 4 weeks, how

about you? How much did they give you? Im on 5 vials right now..I do

not have mtx mixed with it, do you?? I never worry about my labs

because the only thing that every shows elevated for me is my sed

rate or crp(creatine reactive protein). Hang in there and again

welcome to the group. We definately feel and know your pain and

frustration.

Love Pat from MA

.. I started Remicade

> last week still not any better. I have been a lurker since July. It

> has kept me sane to know other people are feeling the same way and

> not realy crazy. -My Birthday Feb. 12

>

> Judy

[Guest guest]

Welcome Pat. That is a good question! Several new things have happened

in the last year about health visitor education and regulation and the

process is not quite complete. I hope Maureen and/or others will chip

in if I am missing or misunderstanding any key points, but this where I

think we have got to:

1. New competencies for health visiting were agreed last year. The NMC

agreed that they should be implemented between September 2003-2005, so

existing programmes are going to have to change quite a bit to reflect

that. These are 'requirements for registration' and no change in the

law is needed for them to come into force. Colleges may develop these

new programmes alongside/within existing community nursing frameworks

or outside them, but in future they will form the basis of registration

as a health visitor (whatever it is called).

2. The NMC is charged with developing a new form of register, to

replace the one that was maintained by the UKCC, and which continues in

existence until the new one comes into being. Following consultation,

the NMC agreed earlier this month that the register should have three

parts: one for nursing, one for midwifery and a third part which is not

yet named. The third part of the register will be for health visitors,

it will be based on the new competencies and, as with the nursing and

midwifery parts of the register, it will be possible for students to

access courses for registration without prior professional

qualifications (i.e. there will be a 'direct entry' option). This is

definitely agreed, and the new register needs to be in place by 1st

November this year.

3. Apart from the name, there are still some important things to be

decided about the 'third part' of the register: like, whether/how other

occupational groups can be absorbed into it, whether different and/or

additional competencies are needed, how to account for the

nursing/midwifery components of health visiting etc. These issues are

actively under consideration by a 'register group' at the NMC, who are

working on the details at present. Once these things have been agreed,

then two more things have to happen in time for the November deadline:

a. The Privy Council has to formally approve the request from the

Nursing and Midwifery Council for the register to be configured in the

way they have agreed and

b. The Statutory Training Rules need to be amended to reflect the shape

of the new register (including which competencies are reflected in each

of the three parts)

So, direct entry has definitely been agreed, but the legislation is not

yet in place; this means that no courses are up and running yet, but

several are actively thinking about it and trying to engage workforce

confederations, who will have to approve funding, sponsor places etc.

I think that some form of national funding system will need to be

agreed so that, like student nurses and student midwives, student health

visitors will be able to access bursaries for the duration of their

training. This, more than the other details and legislative changes, is

the current most difficult sticking point, unless/until workforce

confederations start to press for changes at a national level. Best

wishes

Pat.illingworth@... wrote:

>Hello everyone.

>I'm new to senate and interested in the topic of direct entry HV. Can anyone

>tell me-is this definitely going ahead, has the necessary legislation been

>passed and if it is up and running, has anyone started the courses???

>Pat

>

[Guest guest]

Hi

Pat and

Thanks for the invitation to chip in but as usual , you have the facts absolutely right.

The third part of the register is being developed and the intention is to have a direct entry route however this has yet to be formally agreed by the Council. Health visitors will be 'accommodated' within that part unless the Privy Council choose not to accept the Council's decisions.

The consultation report is available on the web site and I hope all of those who contributed to it will accept my thanks for the very full and complete responses we received.

The next edition of the NMC News will be a virtual one on the web site so keep surfing! all the NMC news and decisions will be communicated in that publication.

Maureen

Re: new member

Welcome Pat. That is a good question! Several new things have happened

in the last year about health visitor education and regulation and the

process is not quite complete. I hope Maureen and/or others will chip

in if I am missing or misunderstanding any key points, but this where I

think we have got to:

1. New competencies for health visiting were agreed last year. The NMC

agreed that they should be implemented between September 2003-2005, so

existing programmes are going to have to change quite a bit to reflect

that. These are 'requirements for registration' and no change in the

law is needed for them to come into force. Colleges may develop these

new programmes alongside/within existing community nursing frameworks

or outside them, but in future they will form the basis of registration

as a health visitor (whatever it is called).

2. The NMC is charged with developing a new form of register, to

replace the one that was maintained by the UKCC, and which continues in

existence until the new one comes into being. Following consultation,

the NMC agreed earlier this month that the register should have three

parts: one for nursing, one for midwifery and a third part which is not

yet named. The third part of the register will be for health visitors,

it will be based on the new competencies and, as with the nursing and

midwifery parts of the register, it will be possible for students to

access courses for registration without prior professional

qualifications (i.e. there will be a 'direct entry' option). This is

definitely agreed, and the new register needs to be in place by 1st

November this year.

3. Apart from the name, there are still some important things to be

decided about the 'third part' of the register: like, whether/how other

occupational groups can be absorbed into it, whether different and/or

additional competencies are needed, how to account for the

nursing/midwifery components of health visiting etc. These issues are

actively under consideration by a 'register group' at the NMC, who are

working on the details at present. Once these things have been agreed,

then two more things have to happen in time for the November deadline:

a. The Privy Council has to formally approve the request from the

Nursing and Midwifery Council for the register to be configured in the

way they have agreed and

b. The Statutory Training Rules need to be amended to reflect the shape

of the new register (including which competencies are reflected in each

of the three parts)

So, direct entry has definitely been agreed, but the legislation is not

yet in place; this means that no courses are up and running yet, but

several are actively thinking about it and trying to engage workforce

confederations, who will have to approve funding, sponsor places etc.

I think that some form of national funding system will need to be

agreed so that, like student nurses and student midwives, student health

visitors will be able to access bursaries for the duration of their

training. This, more than the other details and legislative changes, is

the current most difficult sticking point, unless/until workforce

confederations start to press for changes at a national level. Best

wishes

Pat.illingworth@... wrote:

>Hello everyone.

>I'm new to senate and interested in the topic of direct entry HV. Can anyone

>tell me-is this definitely going ahead, has the necessary legislation been

>passed and if it is up and running, has anyone started the courses???

>Pat

>

[Guest guest]

Thankyou for your reply-I can now follow the gist of those conversations

which obviously relate to this topic on the website.

Pat

Re: new member

Welcome Pat. That is a good question! Several new things have

happened

in the last year about health visitor education and regulation and

the

process is not quite complete. I hope Maureen and/or others will

chip

in if I am missing or misunderstanding any key points, but this

where I

think we have got to:

1. New competencies for health visiting were agreed last year.

The NMC

agreed that they should be implemented between September 2003-2005,

so

existing programmes are going to have to change quite a bit to

reflect

that. These are 'requirements for registration' and no change in

the

law is needed for them to come into force. Colleges may develop

these

new programmes alongside/within existing community nursing

frameworks

or outside them, but in future they will form the basis of

registration

as a health visitor (whatever it is called).

2. The NMC is charged with developing a new form of register, to

replace the one that was maintained by the UKCC, and which continues

in

existence until the new one comes into being. Following

consultation,

the NMC agreed earlier this month that the register should have

three

parts: one for nursing, one for midwifery and a third part which

is not

yet named. The third part of the register will be for health

visitors,

it will be based on the new competencies and, as with the nursing

and

midwifery parts of the register, it will be possible for students to

access courses for registration without prior professional

qualifications (i.e. there will be a 'direct entry' option). This

is

definitely agreed, and the new register needs to be in place by 1st

November this year.

3. Apart from the name, there are still some important things to

be

decided about the 'third part' of the register: like, whether/how

other

occupational groups can be absorbed into it, whether different

and/or

additional competencies are needed, how to account for the

nursing/midwifery components of health visiting etc. These issues

are

actively under consideration by a 'register group' at the NMC, who

are

working on the details at present. Once these things have been

agreed,

then two more things have to happen in time for the November

deadline:

a. The Privy Council has to formally approve the request from the

Nursing and Midwifery Council for the register to be configured in

the

way they have agreed and

b. The Statutory Training Rules need to be amended to reflect the

shape

of the new register (including which competencies are reflected in

each

of the three parts)

So, direct entry has definitely been agreed, but the legislation is

not

yet in place; this means that no courses are up and running yet, but

several are actively thinking about it and trying to engage

workforce

confederations, who will have to approve funding, sponsor places

etc.

I think that some form of national funding system will need to be

agreed so that, like student nurses and student midwives, student

health

visitors will be able to access bursaries for the duration of their

training. This, more than the other details and legislative

changes, is

the current most difficult sticking point, unless/until workforce

confederations start to press for changes at a national level.

Best

wishes

Pat.illingworth@... wrote:

>Hello everyone.

>I'm new to senate and interested in the topic of direct entry HV.

Can anyone

>tell me-is this definitely going ahead, has the necessary

legislation been

>passed and if it is up and running, has anyone started the

courses???

>Pat

>

[Guest guest]

We switched from ABA to VBA (Verbal Behavior Analysis) two years ago. While

there was improvements with ABA, it was slow and not fun for my son. VBA

approach has made my son more verbal and he now looks forward to therapy.

In a message dated 2/26/2003 8:56:41 AM Eastern Standard Time,

psychstudent101@... writes:

> Hi all

> I've just joined this group. I am a second year psychology student at

> NUI Maynooth in Ireland. I hope to pursue a Masters in Behaviour

> Analysis after I graduate, with a view to specialising in eith ASD or

> self-injurious behaviour.

>

> I would be very interested to know how many of use an ABA approach

> (Applied Behavioor Analysis) to working with your kids, and how much

> progress they have made with it. From the few posts I have gotten to

> read so far it is obvious that many of you use at least some

> behaviour priciples (such as time-out) with your kids, but it isn't

> clear whether or not this is withinh an ABA framework.

>

> Eoghan

>

[Guest guest]

Hello Ian and ,

Welcome to our group. You've hit the nail on the head when you found us as

we are sooooooooooooo helpful, sympathetic and pretty darn smart. Sometimes

more than our doctors....... )

I am taking Enbrel and have been for just a little over a year now. It did

not work for me until I added MTX and that took about four months but some of

us have responded to it right away. Six of one and a half a dozen of another

as they say. I hope goes into remission. What are her symptoms? Does

she have the rash or high fevers......fatigue......or mostly just joint pain

and swelling? Stills is a little different in all of us but kind of the same

if that makes any sense.

I hope you can continue to post with our group and keep us informed on how

is doing.

Ca. Carmen

That stands for California as we try to add our place of residence with our

name so we can remember where you live. For some reason when you say London,

Ian, I can picture you there........ ) One of those no sense

things............ )

[Guest guest]

Hello and welcome Ian and im ,i was just recently diagnosed with

stills oct 1 ,2002.I really hope they can when they try the enbrel it works for

her,ive been lucky so far as i have responded to the prednisone really well.Im

30yrs old and live in Edmonton Canada. d.Canada --

Original Message -----

From: iwhiting2000

Stillsdisease

Sent: Sunday, March 09, 2003 1:21 PM

Subject: new member

Hi all,

I'm writing on behalf of my 13 year old daughter , diagnosed

with SD in 1996.

She has been treated with naprosyn, pred, moved onto MTX (but had to

be taken off it because of the side effects) then she was prescribed

Arava. This has been stopped because of facial swelling and redness

of the cheeks. The local hospital ran blood tests for parvovirus but

these came back negative so the swelling was put down to an alleric

reaction to Arava.

is now waiting to start on Enbrel.

Her primary care centre is Great Ormond Street Hospital (GOSH),

London with bloods and physio being carried out by our local hospital.

At 's last appoinment at GOSH, she had 23 joints with active

arthritis, although luckily still has a good range of movement

in her joints.

Ian ('s Dad)

[Guest guest]

Welcome Ian, said it so nicely that we are here and available to

help in any way we can. My name is Patty but often I use the nickname Melt

as in Pattymelt. I have had Stills diagnosed since 1977. Mine is in

remission and we all here wish for to find that soon. We look forward

to knowing you better and helping in any way we can. Melt

new member

> Hi all,

>

> I'm writing on behalf of my 13 year old daughter , diagnosed

> with SD in 1996.

[Guest guest]

Welcome to the Stills support group Ian & !

has been fighting this disease for a few years hasn't she?

It's bad enough when adults get sick, but I feel especially sad

when it's the children. Does have a good attitude about

this? I know sometimes the young ones handle things like this

better than adults. It must hurt you terribly to see her in pain.

Ian, I read an article awhile back that a doctor wrote, and he was

telling of the success he was having treating JRA children with

the Enbrel. I pray that it is the medicine that helps your .

My name is Tricia, I have been with this support group for over

two years, and I have been fighting this " dragon " (as we some-

times call the disease) for well over 20 years. I live in Central

Wisconsin and look forward to getting to know you and your

better.

Again, Wlecome!

~~tricia~~

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

-- new member

Hi all,

I'm writing on behalf of my 13 year old daughter , diagnosed

with SD in 1996.

She has been treated with naprosyn, pred, moved onto MTX (but had to

be taken off it because of the side effects) then she was prescribed

Arava. This has been stopped because of facial swelling and redness

of the cheeks. The local hospital ran blood tests for parvovirus but

these came back negative so the swelling was put down to an alleric

reaction to Arava.

is now waiting to start on Enbrel.

Her primary care centre is Great Ormond Street Hospital (GOSH),

London with bloods and physio being carried out by our local hospital.

At 's last appoinment at GOSH, she had 23 joints with active

arthritis, although luckily still has a good range of movement

in her joints.

Ian ('s Dad)

..

[Guest guest]

Dear Ian & ,

I want to welcome you to the most beautiful island on earth. You both will

find so much comfort and support here with lasting friendships. Ian, you

sound like a wonderful father to reach out and help your daughter like this.

, I am so sorry that you are stricken with this disease, and we want

to help you as much as we can. I have been here now for about three years,

and it has really changed my life. It is such a wonderful place to be when

dealing with this disease. , we are all here for you, and your dad.

Ian, ask us anything. I promise that we will try to help as much as we can.

I am so glad that you found us. Your journey will be very emotional, and

I want you both to know that we really understand what you are going through

Everyone here holds much " high hopes " , and when you hurt, we hurt. There

will be some great days and we want you to share them with us, we will

listen, some bad days too....don't ever worry about asking too many

questions, or just " venting " your frustrations out, this is what we are here

for. It is truly a wonderful group. I really look forward to getting to

know you both better.

Love, Sue #2

-- new member

Hi all,

I'm writing on behalf of my 13 year old daughter , diagnosed

with SD in 1996.

She has been treated with naprosyn, pred, moved onto MTX (but had to

be taken off it because of the side effects) then she was prescribed

Arava. This has been stopped because of facial swelling and redness

of the cheeks. The local hospital ran blood tests for parvovirus but

these came back negative so the swelling was put down to an alleric

reaction to Arava.

is now waiting to start on Enbrel.

Her primary care centre is Great Ormond Street Hospital (GOSH),

London with bloods and physio being carried out by our local hospital.

At 's last appoinment at GOSH, she had 23 joints with active

arthritis, although luckily still has a good range of movement

in her joints.

Ian ('s Dad)

[Guest guest]

In a message dated 3/10/2003 9:08:42 PM Eastern Standard Time,

hguidry@... writes:

> I guess I just want you all to tell me that it is okay if she does

> have autism, that we will still play together and laugh and she will

> hug me and love me and I will be able to do the same to her. How will

> this affect my life? How will it be for future siblings?

>

Hi Heidi and welcome. Is it okay if Camryn (cute name) turns out to have

autism? I won't sugar-coat it. No way. Will she still develop into her

own little person? Yes. Will she show you love? Yes. How will it effect

your life? Greatly. Maddie (9, DS and autism) was dx'd with autism at age

5, but the onset of autism was at the age of about 18 mos. With Maddie, it

was an abrupt event that cooincided with an illness. We watched her slip

away from us in the course of three weeks. Three frantic weeks where I was

in a total panic....I liken it to watching someone jump off a cliff and you

can't do a thing about it. We are in a different place than we were when

Maddie's autism surfaced. We've learned so much about how to reach Maddie

and bring her into our world. She's cuddly and lovable and gives kisses

and hugs (only when SHE wants it though...LOL...thankfully that's a lot).

Maddie is the youngest of five. My other kids adore her. Having so many

siblings has been fabulous for her, and a HUGE help to me. Yes, their

lives are harder because Maddie is their sister, but they have never once

complained about it and they wouldn't trade her for any other sister in the

world.

<<I am scheduling a visit with a pediatric neurologist tomorrow and my

opthamologist wants me to get her an MRI.>>

THis is exactly what I was going to suggest Heidi. When we saw autistic

behaviors appearing in Maddie, we launched into a 3 month round of various

tests. My ped finally thought she must have celiac disease and it was

during an endoscopy/biopsy that they found out she has GERD (gastroesophageol

reflux disease), not CD. She takes meds for that condition and it is under

control. Some of the things you describe absolutely could be the result of

a medical condition. It's good to rule out all those scenarios before

concluding that it's autism.

Welcome to the group again Heidi. We know the torment you are going through

and are here to listen!!!

{{{{{{{{{{{hugs}}}}}}}}}}}

Donna

[Guest guest]

Hi Heidi,

Good Luck with your appointment. Sounds like your daughter, Camryn, is

very lucky to have a Mom so " on the ball " . We found my son to be " slipping

away " as you put it around age 3. At age 5 1/2 he has regained some of his

skills and is making gains again.....I swear it is a matter of getting the

right programming for them. There is hope!!!

[Guest guest]

GO DAWGS !!!!!

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

From: <kevin.m.green1@...>

<gobulldawgs@...>

Sent: Thursday, March 20, 2003 1:50 PM

Name:

Email: superman00_41@...

Birthdate: 24 May 1975

Location: NJ

How long have you been diagnosed: 2 months

What meds do you currently take: Pred. I am tapering from 80 mg a day and

now at 15mg.

Employment (if any): Infantry Officer (US Army) Active Duty

Family Life: Wife and twim girls (born 13 AUG 02)

Hobbies: Spendig time with the family / Running / Lifting / Fighting / Work

[Guest guest]

Hi ! welcome again. It's Melt here and so happy to have you join our

list. Chin up and hope your having a good day. Till soon, Melt

> Name:

>

> Email: superman00_41@...

>

> Birthdate: 24 May 1975

>

[Guest guest]

Thanks, and good to hear from you again. I went for a swim this morning (45

min) instead of a run (knees feel pretty good).

Re: Fw: new member

> Hi ! welcome again. It's Melt here and so happy to have you

> join our

> list. Chin up and hope your having a good day. Till soon, Melt

>

>

> > Name:

> >

> > Email: superman00_41@...

> >

> > Birthdate: 24 May 1975

> >

>

>

>

>

[Guest guest]

That is great!! Maybe you shall be the star athlete in swimming rather than

running. Smiles Melt

Re: Fw: new member

>

> > Hi ! welcome again. It's Melt here and so happy to have you

> > join our

> > list. Chin up and hope your having a good day. Till soon, Melt

> >

> >

> > > Name:

> > >

> > > Email: superman00_41@...

> > >

> > > Birthdate: 24 May 1975

> > >

> >

> >

> >

> >

[Guest guest]

Hi ,

Welcome to the " Stilligan " s Island " support group!

From what I've been reading about your " so far "

experience with the Stills Disease, I'm thinking

you just might be one of the persons diagnosed

who goes into a full nonmed remission within two

years or less. Hopefully that is the case!

Congratulations on your twin girls!! What a blessing!

Be sure to tell your wife that she is welcome here

also. Sometimes (usually) it's difficult for the other

family members when one has this disease, and they

need someone to alk to about it. We are here for her

too.

My name is tricia, I've had this disease since " forever! "

My husband and I live in Wisconsin. Married almost 33

years. 3 healthy (grown) children.

Again, welcome,

~~tricia~~

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

-- Fw: new member

GO DAWGS !!!!!

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

From: <kevin.m.green1@...>

<gobulldawgs@...>

Sent: Thursday, March 20, 2003 1:50 PM

Name:

Email: superman00_41@...

Birthdate: 24 May 1975

Location: NJ

How long have you been diagnosed: 2 months

What meds do you currently take: Pred. I am tapering from 80 mg a day and

now at 15mg.

Employment (if any): Infantry Officer (US Army) Active Duty

Family Life: Wife and twim girls (born 13 AUG 02)

Hobbies: Spendig time with the family / Running / Lifting / Fighting / Work

..

[Guest guest]

Hello kevin and welcome i hope u have the Stills under control sounds like u do

to be able to cut ur pred back from 80mgs to 15 over two months.I started at

60mgs on oct1,2002 and have cut back to 6mgs at present,but now have been told

only 1mg a month to cut back so hopefully 6 more months and ill be med free i

hope.U take care and good luck on the pred reduction . d.Canada

Fw: new member

GO DAWGS !!!!!

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

From: <kevin.m.green1@...>

<gobulldawgs@...>

Sent: Thursday, March 20, 2003 1:50 PM

Name:

Email: superman00_41@...

Birthdate: 24 May 1975

Location: NJ

How long have you been diagnosed: 2 months

What meds do you currently take: Pred. I am tapering from 80 mg a day and

now at 15mg.

Employment (if any): Infantry Officer (US Army) Active Duty

Family Life: Wife and twim girls (born 13 AUG 02)

Hobbies: Spendig time with the family / Running / Lifting / Fighting / Work

[Guest guest]

Tricia

Thank you for responding and making me feel welcome. And yes, the twins are the

best:-) They grow so fast and I can't be away from them for more then an hour

without my heart feeling empty.

I hope I can get off of all the drugs ASAP and stay off. Thanks for inviting my

wife, she is having a difficult time with this whole thing but I can't blame her

it hit us like a freight train. Well, thanks again and I hope you have a great

day today.

kmg

Fw: new member

>

>

>

>

>

>

>

> GO DAWGS !!!!!

>

> ----- Original Message -----

>

> From: <kevin.m.green1@...>

>

> <gobulldawgs@...>

>

> Sent: Thursday, March 20, 2003 1:50 PM

>

>

>

>

>

> Name:

>

>

>

> Email: superman00_41@...

>

>

>

> Birthdate: 24 May 1975

>

>

>

> Location: NJ

>

>

>

> How long have you been diagnosed: 2 months

>

>

>

> What meds do you currently take: Pred. I am tapering from 80 mg a

> day and

>

> now at 15mg.

>

>

>

> Employment (if any): Infantry Officer (US Army) Active Duty

>

>

>

> Family Life: Wife and twim girls (born 13 AUG 02)

>

>

>

> Hobbies: Spendig time with the family / Running / Lifting /

> Fighting / Work

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> .

>

>

[Guest guest]

d.

Thanks for the welcome. Is it taking a while for you to cut down because

you flare as you taper? How can I tell the diff. between steroid withdrawl

and stills pain?

>From: Docken <nickelme@...>

>Reply-Stillsdisease

>Stillsdisease

>Subject: Re: Fw: new member

>Date: Thu, 20 Mar 2003 21:08:14 -0700

>

>Hello kevin and welcome i hope u have the Stills under control sounds like

>u do to be able to cut ur pred back from 80mgs to 15 over two months.I

>started at 60mgs on oct1,2002 and have cut back to 6mgs at present,but now

>have been told only 1mg a month to cut back so hopefully 6 more months and

>ill be med free i hope.U take care and good luck on the pred reduction

>. d.Canada

> Fw: new member

>

>

>

>

>

> GO DAWGS !!!!!

> ----- Original Message -----

> From: <kevin.m.green1@...>

> <gobulldawgs@...>

> Sent: Thursday, March 20, 2003 1:50 PM

>

>

> Name:

>

> Email: superman00_41@...

>

> Birthdate: 24 May 1975

>

> Location: NJ

>

> How long have you been diagnosed: 2 months

>

> What meds do you currently take: Pred. I am tapering from 80 mg a day

>and

> now at 15mg.

>

> Employment (if any): Infantry Officer (US Army) Active Duty

>

> Family Life: Wife and twim girls (born 13 AUG 02)

>

> Hobbies: Spendig time with the family / Running / Lifting / Fighting /

>Work

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hello i havent flared since having the prednisone but i can definitely

tell when i drop sum seem worse and sum i dont notice at all.Usually for me its

just 2 or 3 days for the body to ajust but i havent cut back in bout a month now

i cut 1 mg at the end of april.I wish u continued improvement bro sounds like ur

doin pretty well,im also doin pretty well myself but so out of shape lol.Im a

cement finisher and have returned to work,i do get sore but im not sure whether

to blame the Stills or just my long layoff from work.You said sumthin bout 1 of

your hobbies is fighting,Do you mean as in boxing?Anyways take care.

d.Canada

Fw: new member

>

>

>

>

>

> GO DAWGS !!!!!

> ----- Original Message -----

> From: <kevin.m.green1@...>

> <gobulldawgs@...>

> Sent: Thursday, March 20, 2003 1:50 PM

>

>

> Name:

>

> Email: superman00_41@...

>

> Birthdate: 24 May 1975

>

> Location: NJ

>

> How long have you been diagnosed: 2 months

>

> What meds do you currently take: Pred. I am tapering from 80 mg a day

>and

> now at 15mg.

>

> Employment (if any): Infantry Officer (US Army) Active Duty

>

> Family Life: Wife and twim girls (born 13 AUG 02)

>

> Hobbies: Spendig time with the family / Running / Lifting / Fighting /

>Work

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Yes, Jeet Kune Do. I love it. I was a cop before going into the Army and

studied Aikido with the hand to hand instructor off hours and JKD. When I

was a kid I studied Go Juru. I spar 3 times a week and do bag work 2x's a

week. I know what you mean about being sore after getting back into work or

training. My initial onset kept me from my usual routine for 2 months, when

I went back and even now my calves knot up and hurt for days after a run.

KMG

>From: Docken <nickelme@...>

>Reply-Stillsdisease

>Stillsdisease

>Subject: Re: Fw: new member

>Date: Fri, 21 Mar 2003 22:13:26 -0700

>

>Hello i havent flared since having the prednisone but i can

>definitely tell when i drop sum seem worse and sum i dont notice at

>all.Usually for me its just 2 or 3 days for the body to ajust but i havent

>cut back in bout a month now i cut 1 mg at the end of april.I wish u

>continued improvement bro sounds like ur doin pretty well,im also doin

>pretty well myself but so out of shape lol.Im a cement finisher and have

>returned to work,i do get sore but im not sure whether to blame the Stills

>or just my long layoff from work.You said sumthin bout 1 of your hobbies is

>fighting,Do you mean as in boxing?Anyways take care. d.Canada

> Fw: new member

> >

> >

> >

> >

> >

> > GO DAWGS !!!!!

> > ----- Original Message -----

> > From: <kevin.m.green1@...>

> > <gobulldawgs@...>

> > Sent: Thursday, March 20, 2003 1:50 PM

> >

> >

> > Name:

> >

> > Email: superman00_41@...

> >

> > Birthdate: 24 May 1975

> >

> > Location: NJ

> >

> > How long have you been diagnosed: 2 months

> >

> > What meds do you currently take: Pred. I am tapering from 80 mg a

>day

> >and

> > now at 15mg.

> >

> > Employment (if any): Infantry Officer (US Army) Active Duty

> >

> > Family Life: Wife and twim girls (born 13 AUG 02)

> >

> > Hobbies: Spendig time with the family / Running / Lifting /

>Fighting /

> >Work

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Welcome!!

> Hi, my name is , I just joined this group. I'm a clinical

dietitian in

> a hospital about to launch GBP program. This group has provided a

wealth of

> information so far! I hope to be able to learn and contribute much

more.

[Guest guest]

Welcome , Most seem frustrated with the lack of evidence to base our

protocols I am giving a talk to a professional group in May and have

started a search I will share anything new or substantial I find. I work in

an outpatient clinic setting with a surgeon and our program is a year and

half old. Martha Trenkamp

New Member

Hello,

My name is Marcus, I'm a registered dietitian who has worked

with this population since 1998. I've worked with the same bariatric

surgeon since that time - initially saw pts in his office and now

see them in my private practice. However, that is about to change

as I have just accepted a new position at a weight management center

within our hospital system which is where I will see this same group

of pts going forward. The psychologists who work with our pts are

also at this center. While private practice has it's advantages, I

prefer a situation where I am able to interact with other members of

the team to best assess and treat these pts. And so it looks like I

am leaving my private practice behind to become involved on another

level.

I am also part of our hospital system's newly formed bariatric

surgery task force - looking to standardize care and credential

practitioners who wish to participate in the care of these pts.

Developing sound nutritional standards/protocols will not be easy. I

have always been frusturated by the lack of good evidence out there

regarding nutritional management of these pts and of course every

surgeon seems to have his/her own personal prefs.

Looking forward to learning from and contributing to this list.

Marcus RD