Re:Update Evelyn

[Guest guest]

Hi my name is and I wanted to welcome the new members as they did with

me .Im really greatfull with the group I've have learn alot in here funny

because when I first was diagnosed in September of 2009 I didn't believe at

first.I finish my medication that my doctor prescribe me in my release from the

hospital but because I was doing good I thought everything was just in my head

,but sadly it wasn't like that.Because in April of  2010 I was hospitalized in

really bad shape.      

[Guest guest]

I made a trip to my country in March 2010 Im not going to lie Im not in

alcoholic but I was in vacation and had my margaritas.I got really sick one week

before coming back I didnt go to hospital in my country because I thought it was

a virus but wrong I came on a Saturday and I was hospitalized on a Sunday the

doctor said my liver was very swollen and and I also had heppatitis,and ,and

trombosys I dont really know if I spelled it wright.    

[Guest guest]

So the doctors said that I was in really bad shape and thats when it really hit

me that I really did have a disease.The doctor said it was a flare of my disease

but truly were I have learn alot is in this group not with my doctors.I was

totally in blank but now I really do feel very prepare for my next appointment

in December.Im right now in 15 mg of prednisone Ive barely started in April.The

last appointment I had the doctor prescribe me Imuran but I read about it and I

dont like the side effects so Im going to talk with my doctor in this next

appointment .   

[Guest guest]

Now I've have learn how to know my symtoms in my body and how to listend to my

group advices.Because theres alot of members that have alot of experience.I do

get itchy face and my eyes.  My throat hurts and my ears.Not all the time I

think those are just little flares my liver for meanwhile is okey.But my life

has really chaged like it has for everyone else I think.  

[Guest guest]

Im really sorry if I bored you guys with my update I haven't posted for some

time but I always read the emails everyone else posts.I just wanted to thank the

group for shareing all your experience because thats the way I've have learn

alot like all the new members will to.And thank you for taking the time to reply

as well.Im new at this computer thing but I know more than when I started.Take

care everybody. 

[Guest guest]

Hy every body my wife have stills sense she was 15 year old she's 26 now we have

7 year of merry and were Ben trying to have a baby and now she 12 weeks of

precnasy and she's using kineret and so far everything looks good. Just wan to

let every one know that were trying kineret fro the precnasy .

ADRIAN L

[Guest guest]

Hi to all well I barely started Imuran 2 months in a half and I had to lower my

prednisone 1mg I was in 10 and by now I should of been in 4 but when I got to

seven I started to feel symtoms that I know I shouldn't feel so Im stuck in

8mg.I was reading about the weight tell me about it I was 300 and now since Ive

been in prednisone Ive gain 70 more.But even do I have that kind of weith Im

really active or at least I tried to be with 3 kids and 2 nieces.But that's for

sure this desease changes your life.For me it hasn't been that bad it has made

me more responsible that for sure.The energy is not the same and trying to

explain your love ones is more hard.My stills affected me in my brain I can't

have long conversations in person or in the phone it makes me really dizzy much

better that last year.But it hasn't been easy.I try to encourage my brain alot

by texting and reading so I dont forget how to do the things.Of course when I

now I have to go out I reserve my energy for that.Or plan the things

ahead.Sometimes it makes me sad that I cant give the quality of time that I was

use to give to my friends or family.But being in this group it has really help

me I dont feel like a martian no more.I dont post that often but I always read

the post and that really has help me alot.I get fevers not that high and in my

last visit to the reumatologist that was in December 2010 I had I little of

imflamation and my sugar is a little high I also take Metforming and baby

aspirin.Thank you all for lisiting because the truth is that Im very reserve I

dont really talk to much obout my desease only here in the group.

[Guest guest]

 thanks for sharing with us again and I for one am glad you talk to us . I know

with out this group I would be lost at times as its my life line a lot of days .

I never thought about still effecting the brain but hey why would it not after

all it is a part of us and stills will hit any part of our body's. Now I know my

memory is not as sharp as it used to be and many are glad for that but I am not

.. but I do challenge my self almost every day by using the computer to talk with

others do some research on a few thing so that I stay learning and I also try to

stay mentally active as the rest of me is well dam lazy if I do say so LOL. now

about weight . I can say I packed on a bit my self when on that darn predasion

junk but after a few years being off of it I had also lost almost all of it and

what I still have I now blame on my wife's good cooking as when I lived alone

and eat my own cooking I was almost to skinny but now i am well let say I could

lose a few 10 pound  x a few LOL. any way thanks for checking in and hugs

The  Redneck  

Marty G     

 

  " I am having an out of money experience. "

" No man's life, liberty, or property is safe while the legislature is in

session. "

...............................Mark Twain (1866)

To learn more about Stills Disease or to make a tax deductible donation:

 http://www.stillsdisease.org/stills_info

[Guest guest]

Hi ; I to get dizzy all the time. I also have gained a lot of weight from

the med's. You are not alone,we all have differant symptoms and feelings about

ourselves. I can get dizzy walking from one room to the other ????  I can get

dizzy as I just set and watch TV. I have been on every diet know to man and can

not lose any weight. We must accept our health and new life we are now in . You

should write more about yourself and get some info and questions answered here.

May God inter your heart.

Proangler56

GARY

________________________________

To: Stillsdisease

Cc: diazxios3@...

Sent: Sun, February 27, 2011 1:55:13 AM

Subject: Re:Update

 

Hi to all well I barely started Imuran 2 months in a half and I had to lower my

prednisone 1mg I was in 10 and by now I should of been in 4 but when I got to

seven I started to feel symtoms that I know I shouldn't feel so Im stuck in

8mg.I was reading about the weight tell me about it I was 300 and now since Ive

been in prednisone Ive gain 70 more.But even do I have that kind of weith Im

really active or at least I tried to be with 3 kids and 2 nieces.But that's for

sure this desease changes your life.For me it hasn't been that bad it has made

me more responsible that for sure.The energy is not the same and trying to

explain your love ones is more hard.My stills affected me in my brain I can't

have long conversations in person or in the phone it makes me really dizzy much

better that last year.But it hasn't been easy.I try to encourage my brain alot

by texting and reading so I dont forget how to do the things.Of course when I

now I have to go out I reserve my energy for that.Or plan the things

ahead.Sometimes it makes me sad that I cant give the quality of time that I was

use to give to my friends or family.But being in this group it has really help

me I dont feel like a martian no more.I dont post that often but I always read

the post and that really has help me alot.I get fevers not that high and in my

last visit to the reumatologist that was in December 2010 I had I little of

imflamation and my sugar is a little high I also take Metforming and baby

aspirin.Thank you all for lisiting because the truth is that Im very reserve I

dont really talk to much obout my desease only here in the group.

[Guest guest]

Marty; I gained 60 lbs and can't exersize because I get to dizzy. I can't even

walk around the block. How did you lose weight?????????

Proangler56

GARY

________________________________

To: Stillsdisease

Sent: Sun, February 27, 2011 3:29:52 AM

Subject: Re: Re:Update

 

 thanks for sharing with us again and I for one am glad you talk to us . I

know

with out this group I would be lost at times as its my life line a lot of days .

I never thought about still effecting the brain but hey why would it not after

all it is a part of us and stills will hit any part of our body's. Now I know my

memory is not as sharp as it used to be and many are glad for that but I am not

.. but I do challenge my self almost every day by using the computer to talk with

others do some research on a few thing so that I stay learning and I also try to

stay mentally active as the rest of me is well dam lazy if I do say so LOL. now

about weight . I can say I packed on a bit my self when on that darn predasion

junk but after a few years being off of it I had also lost almost all of it and

what I still have I now blame on my wife's good cooking as when I lived alone

and eat my own cooking I was almost to skinny but now i am well let say I could

lose a few 10 pound  x a few LOL. any way thanks for checking in and hugs

The  Redneck  

Marty G     

 

  " I am having an out of money experience. "

" No man's life, liberty, or property is safe while the legislature is in

session. "

...............................Mark Twain (1866)

To learn more about Stills Disease or to make a tax deductible donation:

 http://www.stillsdisease.org/stills_info

[Guest guest]

 I have a weird prob,em I do not normally feel any hunger for the most part and

if left to me I forget to eat tell I have such a bad head ack or I get sick

feeling. so that helps . but for me it was being poor and I do mean poor I had

less the $700.00 for food after all my bills were pain when I lived alone as I

had to restart life with nothing as I have side before well okay when I did

start I had 45 cents to my name. how that came to be is a long but sad and harsh

story so we will pass it up for now but it starts with the Big D word because of

me coming down with stills. now also I was off all meds at the time I lost the

weight also. I was also just starting a remission so for me all the stars were

aliened just right at the right time. Now I have never been one to have any

weight problems and my family always hated me for that so when I hit the almost

300 lbs mark it really was some thing to see and it was hard for me to even walk

to the bathroom then.  I do not get any real world excesses now and I never have

been one to do that all I get is my normal day to day thing and now that is

almost nothing but my fingers and toung sure get some good work out as I am a

talker as my post show.

any way now days I eat an average of one some times two meals a day and that is

about it . I do snack a little bit but even that is more fruit and things like

that over cakes and stuff but I never turn down a good baked good also. so I

would have to say it is two fold one my own metabolism jst dose not let me

become to heavy and two I just do not eat much un like what I did when on

predasion man when on that if you did not nail it down I eat it. I do try to be

as active as I can be and that is darn little for me when looking at what I was

before stills. I also am a lot slower and less active then my 83 year old mother

but unlike her I have a driven personality to push my self to get things done no

matter the pin or how I feel and that is both good and bad as I do pay for

things later when I push as I do.

 feeling like I am lost and never going to win I do know that feeling as I lived

it also and it even took control of me once but I will never let that happen

again! O I do have my days were I spend more time in tears then I do any thing

other be it from pain depression or just a feeling of lose . I may not come

across like that here but as I say I have my days I just hide it a lot and when

I post I try not to let it in then . right now walking is a bit hard on me but

that is because I have been pushing my self for a few day working on my truck so

I can keep it drivable. but that's about it no real secret just a very simple

way that I live and how I live as around here there is always way too much month

left after the money is gone so extras just do not happen and a lot of times

that also means food beyond the necessity's. to me being well off any more means

going into a grocery store and buying what you want because you want it not

because its what is on sale or one of the basics needed to live . its like if a

stake passes these lips once in two years I am lucky but I can say it may sound

bad but the fact is I am happier living this way then I was when I could buy

what ever I wanted to and did. as my two lives are 180 off from each other

before stills and my first marriage and now with stills and my second marriage.

 hope that helps some and if not you may be some one other as if any thing

I say or have lived threw helps just one person then all I went threw has been

worth it to me as my life I live now is my best gift and asset any more

hugs and my best with a hope you can get that line out there and be a jerk

waiting for a jerk on the other end LMAO!  as there is nothing like a tight line

to make one feel good. 

The  Redneck  

Marty G     

 

  " I am having an out of money experience. "

" No man's life, liberty, or property is safe while the legislature is in

session. "

...............................Mark Twain (1866)

To learn more about Stills Disease or to make a tax deductible donation:

 http://www.stillsdisease.org/stills_info

[Guest guest]

Hello Marty; Thank you for telling some of your story. I know you could talk all

day about what you have been through . I have been really bad at times and am

having a good day today.YA

Some things I do is when I set on my couch I do leg lifts and arm exersize's

also. It is hard but I need to do anything I can to stay strong and lose weight.

Yes I miss the tight line. I am a serious bass angler. Anyway I drink slimfast

for lunch and oatmeal or something healthy for breakfast and dinner meal I eat

as healthy as I can. I really don't eat much but can't walk around the block I

get to dizzy. I set my PH alarm so I don't miss my med's. I had a broken back

and have rods and screws in my lower spine with cronic pain from 1998

operation.  You need to treat yourself from time to time. I am depressed and it

is Stills and do take med's for depression but doe's no good. I cry at least 2-3

times a day for just little things . I can't help it. I found out if I eat my

dinner before 7:00pm I have a better bowel movement in the morning. I have a

sick stomach every morning. I had ultra sound on my stomach and have swollen

spleen and kidney's. So many symptoms. I started growing my hair long and will

not cut it untill I get remmision. I am 58 and was a hippi so I have had long

hair before. It is down past my caller and past my ears about 3 inch's. I have a

full head of hair and my brother hates it because he has gone bald and he is

only one year older than me. OH ; I almost forgot, the social security has a

tempery benifit you may be able to get if the program is still going.

Also DES Department Economy Security I think that is what it is called.  my

still give out emergancy check to the poor like us. My family makes sure I am ok

with money and things.

Well I am getting tired and hang in there brother it could be worse.

May God Bless you and walk by your side.

Proangler

GARY

________________________________

To: Stillsdisease

Sent: Sun, February 27, 2011 4:47:32 PM

Subject: Re: Re:Update

 

 I have a weird prob,em I do not normally feel any hunger for the most part and

if left to me I forget to eat tell I have such a bad head ack or I get sick

feeling. so that helps . but for me it was being poor and I do mean poor I had

less the $700.00 for food after all my bills were pain when I lived alone as I

had to restart life with nothing as I have side before well okay when I did

start I had 45 cents to my name. how that came to be is a long but sad and harsh

story so we will pass it up for now but it starts with the Big D word because of

me coming down with stills. now also I was off all meds at the time I lost the

weight also. I was also just starting a remission so for me all the stars were

aliened just right at the right time. Now I have never been one to have any

weight problems and my family always hated me for that so when I hit the almost

300 lbs mark it really was some thing to see and it was hard for me to even walk

to the bathroom then.  I do not get any real world excesses now and I never

have

been one to do that all I get is my normal day to day thing and now that is

almost nothing but my fingers and toung sure get some good work out as I am a

talker as my post show.

any way now days I eat an average of one some times two meals a day and that is

about it . I do snack a little bit but even that is more fruit and things like

that over cakes and stuff but I never turn down a good baked good also. so I

would have to say it is two fold one my own metabolism jst dose not let me

become to heavy and two I just do not eat much un like what I did when on

predasion man when on that if you did not nail it down I eat it. I do try to be

as active as I can be and that is darn little for me when looking at what I was

before stills. I also am a lot slower and less active then my 83 year old mother

but unlike her I have a driven personality to push my self to get things done no

matter the pin or how I feel and that is both good and bad as I do pay for

things later when I push as I do.

 feeling like I am lost and never going to win I do know that feeling as I

lived

it also and it even took control of me once but I will never let that happen

again! O I do have my days were I spend more time in tears then I do any thing

other be it from pain depression or just a feeling of lose . I may not come

across like that here but as I say I have my days I just hide it a lot and when

I post I try not to let it in then . right now walking is a bit hard on me but

that is because I have been pushing my self for a few day working on my truck so

I can keep it drivable. but that's about it no real secret just a very simple

way that I live and how I live as around here there is always way too much month

left after the money is gone so extras just do not happen and a lot of times

that also means food beyond the necessity's. to me being well off any more means

going into a grocery store and buying what you want because you want it not

because its what is on sale or one of the basics needed to live . its like if a

stake passes these lips once in two years I am lucky but I can say it may sound

bad but the fact is I am happier living this way then I was when I could buy

what ever I wanted to and did. as my two lives are 180 off from each other

before stills and my first marriage and now with stills and my second marriage.

 hope that helps some and if not you may be some one other as if any thing

I say or have lived threw helps just one person then all I went threw has been

worth it to me as my life I live now is my best gift and asset any more

hugs and my best with a hope you can get that line out there and be a jerk

waiting for a jerk on the other end LMAO!  as there is nothing like a tight

line

to make one feel good. 

The  Redneck  

Marty G     

 

  " I am having an out of money experience. "

" No man's life, liberty, or property is safe while the legislature is in

session. "

...............................Mark Twain (1866)

To learn more about Stills Disease or to make a tax deductible donation:

 http://www.stillsdisease.org/stills_info