New to the group

[Guest guest]

Judy, I live just south of Dayton in Kettering. I had a liver transplant in

1995 due to PSC. I can refer you to my gastro doc who specializes in PSC.

Any other questions feel free to ask. I do not post much, but am will to

answer questions. Hang in there, the initial diagnosis for me finally came

in 1990. I am doing well with my five year LT anniversary coming in

January. My transplant was done at OSU. My initial workup was at UC. I

had to change centers because of my insurance.

Tom LT 1995 PSC

New to the Group

>Hi all:

>My name is Judy and I live near Dayton, Ohio. Not very far from we

>discovered yesterday. We will even go to the same doctor. I am glad I

>discovered this group as I am very confused right now and don't really know

>much yet about my condition. I am 46 years old, I work full time as an

>administrative assistant for a large defense contractor. My husband of 25

>years is an air traffic controller. (He also is an angel and took very

good

>care of me after my GB surgery.) I have one son who is 22 and lives in

>Columbus, Ohio.

>

>I have always had irritable bowel and recently started having gall bladder

>problems. I had lots of bloodwork run while they were trying to decide if

I

>needed gall bladder surgery and during those tests they discovered I had

>elevated liver enzymes. They decided that while they were taking out the

>gall bladder they would do a liver biopsy. The lab here in Dayton couldn't

>decide what the diagnosis was and the sample was sent off to the Mayo

Clinic.

> The results came back as sclerosing cholangitis.

>

>I had lots of complications during the GB surgery. The doctor tried to do

it

>laproscopically, but ran into scar tissue from an earlier surgery. Instead

>of opening me up he decided to laser his way through the scar tissue to the

>gall bladder. All seemed to be going well. They put me in recovery and

then

>I started to bleed profusely. I developed a huge hematoma (blood under my

>skin) the size of 2 1/2 basketballs on my stomach and hip. They were very

>worried about the blood loss and I ended up having to get two pints of

blood.

> The liver had to work extra hard to get rid of the hematoma and I turned

>yellow for 3 days because of it. I had lots of pain and ended up in the

>hospital for a total of 9 days. My surgeon said he thinks I have some type

>of bleeding disorder and need to be tested for that also.

>

>My surgeon said I need to see a specialist at a large University hospital

and

>my family doctor has referred me to a doctor at the University of

Cincinnati.

> My family doctor said I am the first person he has ever had with this

>condition, but he knew right away what it was. Although he scared the heck

>out of me when he said that I'd probably have to be placed on the liver

>transplant list and then walked away!! But, if it wern't for his

persistance

>on my bloodwork, I would have never found out that I had PSC, so I have to

>forgive his bedside manner. When I walked out of his office that day I felt

>like I'd been punched in the stomach -- very nervous and scared. I don't

>have an appointment yet with the specialist and they are going to call me

on

>Monday with one.

>

>My GB surgeon said the disease is in the very early stages. I am very

>nervous to hear what the doctor says. I am a worry wart and this is not

>going to be easy for me. I've begun having mini panic attacks in the

middle

>of the night -- 3 so far this week. I'm not normally a wimp, but I have

>become one in the past month after all I've been through. I am so grateful

>to have found this group and am looking forward to participating.

>Judy

>

>------------------------------------------------------------------------

>Doing everything you can to save for college? Are you sure?

>With Scholars Choice invest up to $150,000 per child. Tax deferred.

>From Salomon Barney

>http://click./1/531/4/_/24674/_/946244919

>

>eGroups.com Home: /group//

> - Simplifying group communications

>

>

[Guest guest]

Judy,

In my husband's experience, he did not have any problems after his

gallbladder surgery. He did have the gas and bloating, and sometimes nausea

and vomiting after a particularly heavy meal prior to the surgery, all of

which resolved after he had the gallbladder removed. I would hope you have

called your doctor and let he or she know about these symptoms you are

experiencing. I hope they ease up soon. Please keep us posted as to how

you are doing.

Liz

[Guest guest]

Judy,

In my husband's experience, he did not have any problems after his

gallbladder surgery. He did have the gas and bloating, and sometimes nausea

and vomiting after a particularly heavy meal prior to the surgery, all of

which resolved after he had the gallbladder removed. I would hope you have

called your doctor and let he or she know about these symptoms you are

experiencing. I hope they ease up soon. Please keep us posted as to how

you are doing.

Liz

[Guest guest]

In a message dated 12/29/1999 3:34:11 PM Eastern Standard Time,

palfeld@... writes:

<< Judy,

With my IBS I would get terrible cramps and solid stool that ended in

diarreha.

When I started taking acidophilus, drinking 8 glasses of purified water,

elimiated sugar, yeast, fried & spicy foods and caffine. It was completely

under

control. Now I'm drinking caffine, eathing everything wrong and because of

the 1

or 2 diet cokes a day, not drinking all my water, I am a mess again. Plus

I've

gained a lot of weight. After the holidays, I swear I'm getting back on

track.

I don't understand why I let myself get off track other than I'm not good at

temptation and when we go square dancing there are always treats there and I

love

sweets so. I wish I had Phil's self control course with this disease it's

more

important for him but the insignificant ailments can be just as dabilitating

and

one of us being sick is enough. So my New Years resolution is to get back on

track and resist-resist-resist.

Peg >>

Peg:

I can relate. I try to eat well, but it is hard like you say. I feel like I

should be floating as much water as I drink. I also cannot stay away from

sweets, like right now I am craving something. Usually right after dinner

for some reason. I cannot eliminate everything that tastes good to me,

afterall eating is one of the pleasures in life and oatmeal just doesn't get

it for me. So I will try to be better, but forgive me if I eat my King Crab

Legs with drawn butter for New Year's Eve, ok? lol

Judy

[Guest guest]

In a message dated 12/29/1999 3:34:11 PM Eastern Standard Time,

palfeld@... writes:

<< Judy,

With my IBS I would get terrible cramps and solid stool that ended in

diarreha.

When I started taking acidophilus, drinking 8 glasses of purified water,

elimiated sugar, yeast, fried & spicy foods and caffine. It was completely

under

control. Now I'm drinking caffine, eathing everything wrong and because of

the 1

or 2 diet cokes a day, not drinking all my water, I am a mess again. Plus

I've

gained a lot of weight. After the holidays, I swear I'm getting back on

track.

I don't understand why I let myself get off track other than I'm not good at

temptation and when we go square dancing there are always treats there and I

love

sweets so. I wish I had Phil's self control course with this disease it's

more

important for him but the insignificant ailments can be just as dabilitating

and

one of us being sick is enough. So my New Years resolution is to get back on

track and resist-resist-resist.

Peg >>

Peg:

I can relate. I try to eat well, but it is hard like you say. I feel like I

should be floating as much water as I drink. I also cannot stay away from

sweets, like right now I am craving something. Usually right after dinner

for some reason. I cannot eliminate everything that tastes good to me,

afterall eating is one of the pleasures in life and oatmeal just doesn't get

it for me. So I will try to be better, but forgive me if I eat my King Crab

Legs with drawn butter for New Year's Eve, ok? lol

Judy

[Guest guest]

Hello Debra,

Welcome to the group. I am man, 28. I have RA, Stills Disease,

Fibromyalgia, Diabetes, migraines,most likely Gastroparesis, and have been

diagnosed with Bipolar Disorder. I was diagnosed when I was 21. I know about

suffering more mentally than physically. I had to give up on my dream of going

into the Criminal Justice field even though I have a BS in Criminal Justice. Now

I have gone into the health field but I have to take breaks in my studies here

and there because my health has gotten worse and I don't want to miss too much

class.

Once again welcome to the group. Hope to hear more from you. Take care.

Hugs and blessings,

man

Corpus Christi, Tx

[Guest guest]

I wanted to take a minute to welcome both Valeria and Debra to our Family. I

know all of you view our group as a family, just as I do.

I am happy that you both found this group and hope that you both feel that

it becomes a family to you also. It didn't take long for me to feel like a

family member once I joined.

My name is Alli (short for ), I have been sick since 2000, but had

symptoms of stills all my life. I have been on disability since early 2004.

At first the Docs thought I had RA, then Lupus, the Rupus. I have had the dx

of Fibro the whole time. I also have Trigeminal Neuralgia, from one of the

attacks of shingles I had on my face in 2001. I was finally DX'd with Stills

in late 2004 early 2005. When the Fevers became more evident and the rash

was actually scene by my doctor. I had the rash in 2001, but was out of town

and didn't go to the ER or a doctor. We did take pictures and the Rheumy

couldn't tell if it was stills or Lupus from pics.

Anyway, Welcome to you all

Hugs,

Alli

[Guest guest]

Welcome Debi,Our dear nursing advisor Kathleen that has Lupus is in the hospital

seriously ill right now so can't welcome you and write to you yet but she will

be happy to as soon as she is well I'm sure.We've had many memebers that are

loved family members here with RA, and various other illnesses and we welcome

you all if you like us, we like you because we understand and think we have the

best family ;0) I hope you and our other members will feel free to join in and

let us become brothers, sisters, uncles, aunts and we even have our Mom (Carole)

and Dad (Bob) Himes. Many hugs for your day,

From: grannygooch1@...

Subject: New to the group

Hi all! I am new to the group and thought I might introduce myself.

Don't know how all this works but I will learn. I don't have Stills, but I

first was diagnosed with fibromyalgia a 1 and 1/2 yrs ago. Also at that time I

found out I have osteoporosis and osteoarthritis. Last month I was diagnosed

with Lupus (Yuck). My dear friend introduced me to this sight.

MARKETPLACE

A bad score is 598. A good idea is checking yours, at

freecreditscore.com.

Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

.

[Guest guest]

Hello Debra and welcome to our FAMILY!!!!!

Yep, that is what this group has become to me...a family...better and more

supportive to me than my own biological family!  I am glad sent you our

way (by the way, she is one strong sister....and....she is the HOTTEST too....is

ok she knows i feel that way bout her!!!)  Mell was THE first person to welcome

me over six years ago and has been very special to me and my wife ever

since!   Interesting thing what you said about Lupus and Stills being closely

related.....absolutely.....another interesting thing....my sister who is five

years older than me has Lupus!  She was diagnosed about 10 years prior to my

onset.......although our base signs and symptoms are not related, many many of

the later s/s are very similar!  Sad for the reason you are here but glad that

you are!!!  Keep comin back to us...we are here for you and each other!

God Bless!

Larry Brown from NC

 

[Guest guest]

Thanks Larry. It means a lot to me to be welcomed. Yes, Patty is one strong

sister and has been so for the 30 yrs. we have been friends. It is nice to have

friends with health problems that you can talk to without them thinking you're a

hypochondriac, lol. I have 2 of those such friends and it means so much to me.

I am still new to the diagnosis, but of course not new to the symptoms cause it

takes forever for them to figure out what the heck it is. I go through my ups

and downs and Patty has always, I mean always, been a phone call away to talk to

and vent when needed, lol. She is a very special person to me. Thanks for the

welcome and I will try to come online and read others struggles. It really does

help. Have a great day and I'll be back to check on you all from time to time.

>

> Hello Debra and welcome to our FAMILY!!!!!

> Yep, that is what this group has become to me...a family...better and more

supportive to me than my own biological family!  I am glad sent you our

way (by the way, she is one strong sister....and....she is the HOTTEST too....is

ok she knows i feel that way bout her!!!)  Mell was THE first person to welcome

me over six years ago and has been very special to me and my wife ever

since!   Interesting thing what you said about Lupus and Stills being closely

related.....absolutely.....another interesting thing....my sister who is five

years older than me has Lupus!  She was diagnosed about 10 years prior to my

onset.......although our base signs and symptoms are not related, many many of

the later s/s are very similar!  Sad for the reason you are here but glad that

you are!!!  Keep comin back to us...we are here for you and each other!

> God Bless!

> Larry Brown from NC

>

>  

>

>

>

[Guest guest]

Thanks Larry. It means a lot to me to be welcomed. Yes, Patty is one strong

sister and has been so for the 30 yrs. we have been friends. It is nice to have

friends with health problems that you can talk to without them thinking you're a

hypochondriac, lol. I have 2 of those such friends and it means so much to me.

I am still new to the diagnosis, but of course not new to the symptoms cause it

takes forever for them to figure out what the heck it is. I go through my ups

and downs and Patty has always, I mean always, been a phone call away to talk to

and vent when needed, lol. She is a very special person to me. Thanks for the

welcome and I will try to come online and read others struggles. It really does

help. Have a great day and I'll be back to check on you all from time to time.

>

> Hello Debra and welcome to our FAMILY!!!!!

> Yep, that is what this group has become to me...a family...better and more

supportive to me than my own biological family!  I am glad sent you our

way (by the way, she is one strong sister....and....she is the HOTTEST too....is

ok she knows i feel that way bout her!!!)  Mell was THE first person to welcome

me over six years ago and has been very special to me and my wife ever

since!   Interesting thing what you said about Lupus and Stills being closely

related.....absolutely.....another interesting thing....my sister who is five

years older than me has Lupus!  She was diagnosed about 10 years prior to my

onset.......although our base signs and symptoms are not related, many many of

the later s/s are very similar!  Sad for the reason you are here but glad that

you are!!!  Keep comin back to us...we are here for you and each other!

> God Bless!

> Larry Brown from NC

>

>  

>

>

>

[Guest guest]

Hi everyone!

I am new as well. I didn't see the 20/20 episode til after my sister called to

tell me about it. We are both sufferers.

I always thought I had issues and my family has always made fun of me. I am so

happy to have found this group to know I am not alone!

I cannot stand gum chewing, smacking, popping. (but I can chew it)

I have been in a dressing room before when someone is smacking or cracking their

gum and have mimicked them or said something loud enough for them to hear. I

thought I was nuts.

My husband chomps his gum and it makes me insane! He also snores so we sleep in

separate rooms. I sleep with a fan on (not ceiling) year round and cannot sleep

without some white noise. I also have a white noise machine. I have a group of

girlfriends who like to go away for long weekends and I cannot participate

unless I can afford my own room. They can all sleep 2 to a bed and 4 in a room!

OMG! NO WAY! And it saddens me that I can't.

I tend to mimic as well and never realized why. My hubby chomps his gum and if

I am near him he has to spit it out! I can't even stand to look at someone who

is chomping with their mouth open either with gum or food.

I googled Misophonia after watching the 20/20 episode online and was happy to

see that the things that annoy me are on the list. My ears are very sensitive

and I tend to hear things and get annoyed while others hear nothing.

A funny thing happened this past week. I was cooking dinner and heard a cricket

in the kitchen/family room area. It was making me nuts. I told my son and

husband to help me find it. I had the vacuum out going under everything!!!

Well he has purchased this thing called an Annoy-atron 2.o that has various

sounds. It is magnetic and he stuck it behind a hutch. He had also purchased a

thing called the Eviltron with various scary type sounds to scare our son, who

is always pulling pranks.

So now after seeing the 20/20 episode and finding this group I know what is

wrong with me and will hope for a cure!

[Guest guest]

I'm also new. Joined after my mom called to tell me about the 20/20 episode

last night. I've known there was a name for what I deal with for a couple of

years, but I haven't had a chance to figure out which doctor to go to for an

official diagnosis. I would characterize myself as having mild adult-onset

misophonia.

About 6 years ago, I attended some anger-management classes because I was really

concerned about the level of rage I'd feel over seemingly innocent stupid stuff.

It had gotten progressively noticeable for the few years leading up to that

point. I didn't use to struggle with noise annoyances until after I was married

and we were living in our current house.

It started with the neighbor's teenage son who played his music with the bass

turned on very high. All I could hear/feel is the bass, not even the rhythm or

melody. I also have social anxiety, but this noise actually drove me to go next

door, in my robe no less, telling him to turn it down. I've called the police

on him. I've pounded the walls, cursing, crying, yelling. Usually, my husband

goes next door to ask him to turn it down, but since we've also noticed that our

asanine neighbors have friends who come over and blast their car stereo with the

windows down as they wait for someone to join them, or they do it when washing

their car. I've gone out to several neighbors to ask them to turn it down.

Once, one of them laughed and said that he can hear us walking up and down our

stairs too. That's when I realized there's something wrong with my extreme

reaction.

One of my dogs also whines at this soft, high-pitched decibel. I have

threatened to to throw him out the window for that. I instantly feel guilty for

it, but I cannot think straight when he does it. It does take me a little bit

before I have the reaction, though. I can tolerate it for a little while, but

now that I've been reading through some of your posts, I think it may have to do

with the level of stress I'm under. When I'm relaxed more, it takes more to

throw me over the edge.

Finally, my poor husband has sleep apnea. We thought the problem of his snoring

would get resolved once he got a bipap machine, but now I cannot tolerate the

sound of the stupid machine! Even if it doesn't leak air, just the humming of

it drives me insane. So we sleep in separate rooms. With this trigger, I'm

glad that for the most part I can just avoid it. Except when we travel. I've

once spent the night in the bathtub, to no avail, because I couldn't get away

from the noise.

We've tried pink/brown/grey/white noise aps to help us try to sleep in the same

bed, but actually it does no good and only becomes yet another annoying sound I

need to get away from. I'd fall asleep to it but then when it'd loop around to

the beginning, I'd notice the slight change in the sound and it'd wake me up

over and over again. I cannot mask the trigger sounds. This is especially true

for sleep. I have to have silence to relax enough to go to sleep. When our

neighbors have parties, I stay up watching TV or even go on a walk in the middle

of the night, because there is no chance for me to fall asleep.

I'm so thankful for this group, and I hope I can figure out how to maneuver this

thread to get to know some of you.

My main concern has been that my reactions have made me question my faith, in

that I feel evil when I have violent thoughts in response to a trigger. (Hence

the anger management classes, which, btw, taught me that anger is a secondary

emotion, caused by some other emotion like frustration over loss of control,

which is absolutely true in my case - I'm a control freak.)

I'd also like to add that I noticed some discuss the possible link between 4S

and Autism Spectrum disorders, and my sister has Asperger's. Our mom has an

unusual sensitivity to smells, and cannot tolerate cologne/perfume. So all of

this info is slowly starting to add up and making me feel normal.

Thanks for this group!

>

> Hi everyone!

>

> I am new as well. I didn't see the 20/20 episode til after my sister called

to tell me about it. We are both sufferers.

>

> I always thought I had issues and my family has always made fun of me. I am so

happy to have found this group to know I am not alone!

>

> I cannot stand gum chewing, smacking, popping. (but I can chew it)

> I have been in a dressing room before when someone is smacking or cracking

their gum and have mimicked them or said something loud enough for them to hear.

I thought I was nuts.

>

> My husband chomps his gum and it makes me insane! He also snores so we sleep

in separate rooms. I sleep with a fan on (not ceiling) year round and cannot

sleep without some white noise. I also have a white noise machine. I have a

group of girlfriends who like to go away for long weekends and I cannot

participate unless I can afford my own room. They can all sleep 2 to a bed and

4 in a room! OMG! NO WAY! And it saddens me that I can't.

>

> I tend to mimic as well and never realized why. My hubby chomps his gum and

if I am near him he has to spit it out! I can't even stand to look at someone

who is chomping with their mouth open either with gum or food.

>

> I googled Misophonia after watching the 20/20 episode online and was happy to

see that the things that annoy me are on the list. My ears are very sensitive

and I tend to hear things and get annoyed while others hear nothing.

>

> A funny thing happened this past week. I was cooking dinner and heard a

cricket in the kitchen/family room area. It was making me nuts. I told my son

and husband to help me find it. I had the vacuum out going under everything!!!

Well he has purchased this thing called an Annoy-atron 2.o that has various

sounds. It is magnetic and he stuck it behind a hutch. He had also purchased a

thing called the Eviltron with various scary type sounds to scare our son, who

is always pulling pranks.

>

> So now after seeing the 20/20 episode and finding this group I know what is

wrong with me and will hope for a cure!

>

[Guest guest]

My neighbor played his music so all I could hear/feel was the bass--same thing--I would get so angry, couldn't sleep, just get so upset. He and I went round and round. I slept on my couch many nights. I some point he apologized and moved his music to another room and I almost never hear it. Again, I think part of that it just him being inconsiderate but the sound does drive me crazy. I am sure many people would never hear it. From: Karolina

To: Soundsensitivity Sent: Sunday, May 20, 2012 3:02 PM Subject: Re: New to the group

I'm also new. Joined after my mom called to tell me about the 20/20 episode last night. I've known there was a name for what I deal with for a couple of years, but I haven't had a chance to figure out which doctor to go to for an official diagnosis. I would characterize myself as having mild adult-onset misophonia.

About 6 years ago, I attended some anger-management classes because I was really concerned about the level of rage I'd feel over seemingly innocent stupid stuff. It had gotten progressively noticeable for the few years leading up to that point. I didn't use to struggle with noise annoyances until after I was married and we were living in our current house.

It started with the neighbor's teenage son who played his music with the bass turned on very high. All I could hear/feel is the bass, not even the rhythm or melody. I also have social anxiety, but this noise actually drove me to go next door, in my robe no less, telling him to turn it down. I've called the police on him. I've pounded the walls, cursing, crying, yelling. Usually, my husband goes next door to ask him to turn it down, but since we've also noticed that our asanine neighbors have friends who come over and blast their car stereo with the windows down as they wait for someone to join them, or they do it when washing their car. I've gone out to several neighbors to ask them to turn it down. Once, one of them laughed and said that he can hear us walking up and down our stairs too. That's when I realized there's something wrong with my extreme reaction.

One of my dogs also whines at this soft, high-pitched decibel. I have threatened to to throw him out the window for that. I instantly feel guilty for it, but I cannot think straight when he does it. It does take me a little bit before I have the reaction, though. I can tolerate it for a little while, but now that I've been reading through some of your posts, I think it may have to do with the level of stress I'm under. When I'm relaxed more, it takes more to throw me over the edge.

Finally, my poor husband has sleep apnea. We thought the problem of his snoring would get resolved once he got a bipap machine, but now I cannot tolerate the sound of the stupid machine! Even if it doesn't leak air, just the humming of it drives me insane. So we sleep in separate rooms. With this trigger, I'm glad that for the most part I can just avoid it. Except when we travel. I've once spent the night in the bathtub, to no avail, because I couldn't get away from the noise.

We've tried pink/brown/grey/white noise aps to help us try to sleep in the same bed, but actually it does no good and only becomes yet another annoying sound I need to get away from. I'd fall asleep to it but then when it'd loop around to the beginning, I'd notice the slight change in the sound and it'd wake me up over and over again. I cannot mask the trigger sounds. This is especially true for sleep. I have to have silence to relax enough to go to sleep. When our neighbors have parties, I stay up watching TV or even go on a walk in the middle of the night, because there is no chance for me to fall asleep.

I'm so thankful for this group, and I hope I can figure out how to maneuver this thread to get to know some of you.

My main concern has been that my reactions have made me question my faith, in that I feel evil when I have violent thoughts in response to a trigger. (Hence the anger management classes, which, btw, taught me that anger is a secondary emotion, caused by some other emotion like frustration over loss of control, which is absolutely true in my case - I'm a control freak.)

I'd also like to add that I noticed some discuss the possible link between 4S and Autism Spectrum disorders, and my sister has Asperger's. Our mom has an unusual sensitivity to smells, and cannot tolerate cologne/perfume. So all of this info is slowly starting to add up and making me feel normal.

Thanks for this group!

>

> Hi everyone!

>

> I am new as well. I didn't see the 20/20 episode til after my sister called to tell me about it. We are both sufferers.

>

> I always thought I had issues and my family has always made fun of me. I am so happy to have found this group to know I am not alone!

>

> I cannot stand gum chewing, smacking, popping. (but I can chew it)

> I have been in a dressing room before when someone is smacking or cracking their gum and have mimicked them or said something loud enough for them to hear. I thought I was nuts.

>

> My husband chomps his gum and it makes me insane! He also snores so we sleep in separate rooms. I sleep with a fan on (not ceiling) year round and cannot sleep without some white noise. I also have a white noise machine. I have a group of girlfriends who like to go away for long weekends and I cannot participate unless I can afford my own room. They can all sleep 2 to a bed and 4 in a room! OMG! NO WAY! And it saddens me that I can't.

>

> I tend to mimic as well and never realized why. My hubby chomps his gum and if I am near him he has to spit it out! I can't even stand to look at someone who is chomping with their mouth open either with gum or food.

>

> I googled Misophonia after watching the 20/20 episode online and was happy to see that the things that annoy me are on the list. My ears are very sensitive and I tend to hear things and get annoyed while others hear nothing.

>

> A funny thing happened this past week. I was cooking dinner and heard a cricket in the kitchen/family room area. It was making me nuts. I told my son and husband to help me find it. I had the vacuum out going under everything!!! Well he has purchased this thing called an Annoy-atron 2.o that has various sounds. It is magnetic and he stuck it behind a hutch. He had also purchased a thing called the Eviltron with various scary type sounds to scare our son, who is always pulling pranks.

>

> So now after seeing the 20/20 episode and finding this group I know what is wrong with me and will hope for a cure!

>

[Guest guest]

Welcome to the group, Mackenzie! I am sure you will find LOTS of support and

information here.

Sent from my Verizon Wireless Phone

New to the group

Hello. My name is Mackenzie and I am 30 year old female. I was diagnosed

with AOSD in october of 2011. It took a month and a half to get diagnosed

after I a started experiencing severe symptoms. I went from being a fully

functioning and healthy individual to being in a wheel chair unable to care

for myself. Even after the diagnoses it took several more months to get my

flares under control. I am doing significantly better now due to the

medications and a blood transfusion. I am walking again and doing some of

my old hobbies such as gardening again but am still not back to work. I am

extremely fortunate that my wife has been able to support us financially

although it has been very difficult. I joined this group as a way to get

and possible give support to others suffering from Stills disease. I am

looking forward to learning more about peoples experiences and what seems to

help others living with this disease.

[Guest guest]

Hi Simone,

Welcome to the group! I am a Mom of a 30 yeard old daughter with Still's

Disease. I am so glad that the treatment they have giving you is so helpful. 

Yes steroids can be bad, and usually they can wean you off of them after awhile,

we can hope. Know that you have my support and prayers to heal and live a good

quality of life.

 

>To: " Stillsdisease " <Stillsdisease >

>Sent: Wednesday, July 18, 2012 5:03 PM

>Subject: New to the group

>

>

> 

>Hello,

>

>My name is Simone and I am 27 years old. I´m Brazilian and I apologize for my

English, because it isn’t good. But this group have motivated I improve my

English.

>

>I was diagnosed with Still’s Disease since last year (September) and until

now I have been treated.  I had only one outbreak  characterized by systemic

symptoms (fever around two months, rush and itch in the body,  pain in the

articulations, and alterations in the laboratory variables. I was hospitalized

for 20 days and it was terrible for me and my family. I didn’t response to

AINE therapy, but presented good response to steroid treatment.  Now, passed 11

months, I am taking prednisone (15 mg/day); methotrexate (15 mg/week); sodium

alendronate (70 mg/week); D vitamin, omeprazole, domperidone and folic acid.

Since I started the steroid treatment, I haven’t had any signs of disease and

I have had a good evolution.  Now I work normally and my life is good and I’m

happy with my response to the treatment.

>I follow the treatment in the university hospital in Brazil. I really think

that exchange information about this disease is very important to patient and

its family, and can improve the life’s quality.

>

>I confess that I have worried me about the stories reported in this group,

because some are very sad… and I know how is difficult to be sick. In other

hand, I am happy to meet people very solidary and willing to help others living

with this disease. 

>

>Thanks for the help! I wish health to all.

>

>Hugs

>

>

[Guest guest]

Welcome to Simone and Mackenzie :-) Hugs Fran

To: Stillsdisease

From: butterflychaser999@...

Date: Thu, 19 Jul 2012 00:18:05 -0700

Subject: Re: New to the group

Hi Simone,

Welcome to the group! I am a Mom of a 30 yeard old daughter with Still's

Disease. I am so glad that the treatment they have giving you is so helpful.

Yes steroids can be bad, and usually they can wean you off of them after awhile,

we can hope. Know that you have my support and prayers to heal and live a good

quality of life.

>To: " Stillsdisease " <Stillsdisease >

>Sent: Wednesday, July 18, 2012 5:03 PM

>Subject: New to the group

>

>

>

>Hello,

>

>My name is Simone and I am 27 years old. I´m Brazilian and I apologize for my

English, because it isn’t good. But this group have motivated I improve my

English.

>

>I was diagnosed with Still’s Disease since last year (September) and until now

I have been treated. I had only one outbreak characterized by systemic

symptoms (fever around two months, rush and itch in the body, pain in the

articulations, and alterations in the laboratory variables. I was hospitalized

for 20 days and it was terrible for me and my family. I didn’t response to AINE

therapy, but presented good response to steroid treatment. Now, passed 11

months, I am taking prednisone (15 mg/day); methotrexate (15 mg/week); sodium

alendronate (70 mg/week); D vitamin, omeprazole, domperidone and folic acid.

Since I started the steroid treatment, I haven’t had any signs of disease and I

have had a good evolution. Now I work normally and my life is good and I’m

happy with my response to the treatment.

>I follow the treatment in the university hospital in Brazil. I really think

that exchange information about this disease is very important to patient and

its family, and can improve the life’s quality.

>

>I confess that I have worried me about the stories reported in this group,

because some are very sad… and I know how is difficult to be sick. In other

hand, I am happy to meet people very solidary and willing to help others living

with this disease.

>

>Thanks for the help! I wish health to all.

>

>Hugs

>

>