I'm New

[Guest guest]

Hi a; my name is Tracey. I, too, have depression and a learning disability (among other things). My learning disability is called Nonverbal Learning Disability. Don't let the name fool you; I *can* talk (the problem is getting me to shut up! LOL!) My learning disability affects my reading comprehension skills, and my ability to " read " nonverbal communication (facial expression, tone of voice, etc.) When you say you " don't understand anything about [your] conditions, " what do you mean? Is there anything specific you want to know? If your doctor hasn't taken the time to explain your health problems to you, my suggestion would be to write down a list of the questions you have, make an appointment with him (tell the scheduler that you are mainly there for a " talk session, " so he/she can set aside enough time for you to get all your questions answered in one shot. Along with writing down the questions you have *before* talking to the doctor, make sure you take a blank piece of paper with you to the appointment. Inevitably, the answers I get from my doctor just leads to more questions. Writing those new questions down will help you remember to ask them; especially if your doctor is in the middle of answering one question when you think of a new question. It may also be helpful (if your doctor gives the " Okay " ) to tape record the conversation. Doctors tend to give a lot of information very quickly, which can sometimes cause the " in one ear and out the other " effect. By tape recording the conversation, you can go back and listen to the tape if you should forget anything the doctor told you.

If you do that and you *still* don't get your questions answered, I suggest looking things up on the internet. I have solved many of my own health problems just by doing internet searches. If my doctors haven't been able to figure out why I'm having <insert symptom here>, I type the symptom into a Google search. It sometimes takes looking through a LOT of pointless websites, but eventually I'll come across something that makes me think " This could be it. " When that happens, I print out the information from the site, take it to my doctor and say " This sounds like what I'm dealing with; what do you think? " Of the hundreds of times I've done that, I would say that my " hunches " are right about 95% of the time.

Sorry this got so long, a. I hope some of this proves helpful to you.TraceyOn 2/19/06, a <

mhmilligan@...> wrote:My name is a and i am from British Columbia Canada, i am so

scared i have type 2 diabetes, severe sleep apnea, something is wrongwith my liver, sezures, bi-polor, depression, learning disability, ifeel like crying all the time because i don't understand anythingabout my condtions can someone please help?

thanksHugsa~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives-

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~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Hi

I just emailed you

Hugs

a

Please added me to your Messenger my ID is mhmilligan2004

> My name is a and i am from British Columbia Canada, i am so

> scared i have type 2 diabetes, severe sleep apnea, something is wrong

> with my liver, sezures, bi-polor, depression, learning disability, i

> feel like crying all the time because i don't understand anything

> about my condtions can someone please help?

>

> thanks

>

> Hugs

> a

>

>

>

>

>

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Being Sick Community

>

>

> Message Archives-/messages

>

> Chat:- Scheduled Chats at

> /chat

>

> Bookmarks:-

> Add a website URL you have found useful.

> /links

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> Please contact a moderator

> email: -owner

>

> Subscription Details:-

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receive.

> 2) Daily Digest - sends you 25 messages in one single email for you

to browse. This is an excellent option if you receive alot of email.

> 3) Web only/No mail - means that you can pop into groups at

your convenience and receive no email.

>

> To modify your subscription settings please visit:-

> /join

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this group is qualified to diagnose medical conditions. If you feel

you need medical attention, seek the advice of a qualified physician.

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> When nothing is sure, everything is possible.

>

> --- Margaret Drabble

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

[Guest guest]

What I don’t understand is what they

are tell me, I know eat right take your meds etc, but I have a learning

disability also mine is called Developmentaly delayed which means it takes me

longer to comprehension stuff, my reading and writing isn’t great are all

too, I have a appointment in March with the diabetes clinc

Thanks for all the info you typed

Hugs

a

From:

[mailto: ] On Behalf Of Tracey White

Sent: Sunday, February 19, 2006

1:42 PM

Subject: Re: I'm new

Hi a; my name is

Tracey. I, too, have depression and a learning disability (among other things).

My learning disability is called Nonverbal Learning Disability. Don't let the

name fool you; I *can* talk (the problem is getting me to shut up! LOL!) My

learning disability affects my reading comprehension skills, and my ability to

" read " nonverbal communication (facial expression, tone of voice,

etc.)

When you say you " don't understand anything about [your] conditions, "

what do you mean? Is there anything specific you want to know? If your doctor

hasn't taken the time to explain your health problems to you, my suggestion

would be to write down a list of the questions you have, make an appointment

with him (tell the scheduler that you are mainly there for a " talk

session, " so he/she can set aside enough time for you to get all your

questions answered in one shot.

Along with writing down the questions you have *before* talking to the doctor,

make sure you take a blank piece of paper with you to the appointment.

Inevitably, the answers I get from my doctor just leads to more questions.

Writing those new questions down will help you remember to ask them; especially

if your doctor is in the middle of answering one question when you think of a

new question.

It may also be helpful (if your doctor gives the " Okay " ) to tape

record the conversation. Doctors tend to give a lot of information very

quickly, which can sometimes cause the " in one ear and out the other "

effect. By tape recording the conversation, you can go back and listen to the

tape if you should forget anything the doctor told you.

If you do that and you *still* don't get your questions answered, I suggest

looking things up on the internet. I have solved many of my own health problems

just by doing internet searches. If my doctors haven't been able to figure out

why I'm having <insert symptom here>, I type the symptom into a Google

search. It sometimes takes looking through a LOT

of pointless websites, but eventually I'll come across something that makes me

think " This could be it. " When that happens, I print out the

information from the site, take it to my doctor and say " This sounds like

what I'm dealing with; what do you think? " Of the hundreds of times I've

done that, I would say that my " hunches " are right about 95% of the

time.

Sorry this got so long, a. I hope some of this proves helpful to you.

Tracey

On 2/19/06, a

< mhmilligan@...> wrote:

My name is a and i

am from British Columbia Canada, i am so

scared i have type 2 diabetes, severe sleep apnea, something is wrong

with my liver, sezures, bi-polor, depression, learning disability, i

feel like crying all the time because i don't understand anything

about my condtions can someone please help?

thanks

Hugs

a

~~~~ *** ~~~ *** ~~~ *** ~~~~

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This group is not intended to diagnose or treat illnesses. No one on

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~~~~ *** ~~~ *** ~~~ *** ~~~~

When nothing is sure, everything is possible.

--- Margaret Drabble

~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Hi ia, I am glad you emailed me. I would love to keep in touch and chat. I am adding you to my messenger list Kepp u'r chin up and keep smiling a <mhmilligan@...> wrote: Hi I just emailed youHugsaPlease added me to your Messenger my ID is mhmilligan2004> My name is a and i am from British Columbia Canada, i am so > scared i have type 2 diabetes, severe sleep apnea, something is wrong > with my liver, sezures, bi-polor, depression, learning disability, i > feel like crying all the time because i don't understand anything > about my condtions can someone please help?> > thanks> > Hugs> a> > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Being Sick Community> > > Message Archives-/messages> > Chat:- Scheduled Chats at

> /chat> > Bookmarks:-> Add a website URL you have found useful.> /links> > Personal Complaints or problems:-> Please contact a moderator > email: -owner > > Subscription Details:-> 1) Individual email - means that every email sent to the list youreceive.> 2) Daily Digest - sends you 25 messages in one single email for youto browse. This is an excellent option if you receive alot of email.> 3) Web only/No mail - means that you can pop into groups atyour convenience and receive no email.> > To modify your subscription settings please visit:- > /join> > To subscribe or unsubscribe please email:-> -subscribe > -unsubscribe >

> This group is not intended to diagnose or treat illnesses. No one onthis group is qualified to diagnose medical conditions. If you feelyou need medical attention, seek the advice of a qualified physician.> ~~~~ *** ~~~ *** ~~~ *** ~~~~> When nothing is sure, everything is possible.> > --- Margaret Drabble> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> >

[Guest guest]

thanks

Hugs

a

> > My name is a and i am from British Columbia Canada, i am so

> > scared i have type 2 diabetes, severe sleep apnea, something is wrong

> > with my liver, sezures, bi-polor, depression, learning disability, i

> > feel like crying all the time because i don't understand anything

> > about my condtions can someone please help?

> >

> > thanks

> >

> > Hugs

> > a

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Being Sick Community

> >

> >

> > Message Archives-/messages

> >

> > Chat:- Scheduled Chats at

> > /chat

> >

> > Bookmarks:-

> > Add a website URL you have found useful.

> > /links

> >

> > Personal Complaints or problems:-

> > Please contact a moderator

> > email: -owner

> >

> > Subscription Details:-

> > 1) Individual email - means that every email sent to the list you

> receive.

> > 2) Daily Digest - sends you 25 messages in one single email for you

> to browse. This is an excellent option if you receive alot of email.

> > 3) Web only/No mail - means that you can pop into groups at

> your convenience and receive no email.

> >

> > To modify your subscription settings please visit:-

> > /join

> >

> > To subscribe or unsubscribe please email:-

> > -subscribe

> > -unsubscribe

> >

> > This group is not intended to diagnose or treat illnesses. No one on

> this group is qualified to diagnose medical conditions. If you feel

> you need medical attention, seek the advice of a qualified physician.

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > When nothing is sure, everything is possible.

> >

> > --- Margaret Drabble

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> >

> >

[Guest guest]

Hi a! Welcome to the group! I too am new. I'm sooo sorry you are soo ill! It is very scary! I too am sickly but not as bad as you! I'm sorry I didnt' reply sooner, but my youngest daughter is in Italy and I've had to stay offline, waiting for her call. There should be medicine that can help your diabetes and sleep apnea. I use to work for a dr who had a sleep disorder clinic and I know a lot of people that take Ambien but I don't know what kind of meds you can get there in your country. Your dr should be helping you and maybe seeing a counselor would help your nerves: I saw one and she helped me a lot! There is also meds for bi-polar and depression: anti depressants I know of: Prozac. My daughter has a rare blood disease and had seizures and they gave her meds that helped. I pray that you will get better Honey! Take good care of you! ((((((( Hugs! )))))) Dekoker. a

<mhmilligan@...> wrote: My name is a and i am from British Columbia Canada, i am so scared i have type 2 diabetes, severe sleep apnea, something is wrong with my liver, sezures, bi-polor, depression, learning disability, i feel like crying all the time because i don't understand anything about my condtions can someone please help?thanksHugsa~~~~ *** ~~~ *** ~~~ *** ~~~~The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email:

-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ ***

~~~~

[Guest guest]

laura hi its michele we met on another board do you remember me i hope so i would really like to chat with you again if you do send me an email its been a while i hope we can chat again maybe on im again if you still have messanger i really miss you im me or write me back thanks michele Dekoker <laura.dekoker@...> wrote: Hi a! Welcome to the group! I too am new. I'm sooo sorry you are soo ill! It is very scary! I too am sickly but not as bad as you! I'm sorry I didnt' reply sooner, but my youngest daughter is

in Italy and I've had to stay offline, waiting for her call. There should be medicine that can help your diabetes and sleep apnea. I use to work for a dr who had a sleep disorder clinic and I know a lot of people that take Ambien but I don't know what kind of meds you can get there in your country. Your dr should be helping you and maybe seeing a counselor would help your nerves: I saw one and she helped me a lot! There is also meds for bi-polar and depression: anti depressants I know of: Prozac. My daughter has a rare blood disease and had seizures and they gave her meds that helped. I pray that you will get better Honey! Take good care of you! ((((((( Hugs! )))))) Dekoker. a <mhmilligan@...> wrote: My name is a and i am from British Columbia Canada, i am so scared i have type 2 diabetes, severe sleep apnea, something

is wrong with my liver, sezures, bi-polor, depression, learning disability, i feel like crying all the time because i don't understand anything about my condtions can someone please help?thanksHugsa~~~~ *** ~~~ *** ~~~ *** ~~~~The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means

that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

HI MICHELLE! WHAT A GREAT SURPRISE! I'm sooo sorry we lost touch! I had to disconnect my dsl cos my eldest daughter moved out and didn't realize I'd lose all my addresses! I lost yours! Here is my new e-mail address: laura.dekoker@... The only difference is the . in between my names. Please feel free to e-mail me anytime! I would like to chat but can't afford the 'voice' im, just the normal one ok? I read the 'terms and agreement' and they can charge you extra. My son, who is disabled pays the utilities and he doens't have a lot of extra $ so I dont' want to run up our bill. I know you understand. How are you? Last time we e-mailed/chatted, you were quite ill! I pray you are better! How are things at home? How is your Mom? I look forward to hearing from you! Thank you sooo much for your e-mail! Hugs! . :)michele welch <laura_fan@...> wrote: laura hi its michele we met on another board do you remember me i hope so i would really like to chat with you again if you do send me an email its been a while i hope we can chat again maybe on im again if you still have messanger i really miss you im me or write me back thanks michele Dekoker <laura.dekoker@...> wrote: Hi a! Welcome to the group! I too am new. I'm sooo sorry you are soo ill! It is very

scary! I too am sickly but not as bad as you! I'm sorry I didnt' reply sooner, but my youngest daughter is in Italy and I've had to stay offline, waiting for her call. There should be medicine that can help your diabetes and sleep apnea. I use to work for a dr who had a sleep disorder clinic and I know a lot of people that take Ambien but I don't know what kind of meds you can get there in your country. Your dr should be helping you and maybe seeing a counselor would help your nerves: I saw one and she helped me a lot! There is also meds for bi-polar and depression: anti depressants I know of: Prozac. My daughter has a rare blood disease and had seizures and they gave her meds that helped. I pray that you will get better Honey! Take good care of you! ((((((( Hugs! )))))) Dekoker. a <mhmilligan@...> wrote: My name is a and

i am from British Columbia Canada, i am so scared i have type 2 diabetes, severe sleep apnea, something is wrong with my liver, sezures, bi-polor, depression, learning disability, i feel like crying all the time because i don't understand anything about my condtions can someone please help?thanksHugsa~~~~ *** ~~~ *** ~~~ *** ~~~~The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email

for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Hi !!

My, what a story....

A couple of things I wanted to mention to you....Actually, Enbrel, Humira, and

Infliximab(Remicade) have a greater risk than Kineret(Anakinra). Due to the

increased supression of the immune system, there is a greater risk for

developing infection with less of an ability to fight the infection while on

drugs like Enbrel. Also, Kineret(Anakinra) is used to target IL-1 whereas the

others target TNF-that is an important factor if there is a relatively good

reason to believe one mutation over another!

For your daughter with belly issues....has she has a colonoscopy/endoscopy

done? Generally with children with genetic PFS, belly issues are not

uncommon....the inflammation just takes over and it must be controlled. Imuran

is also an anti-inflammatory or immuno suppresant drug that has been used in PFS

cases with related inflammed bowel disease.

I just had a meeting last evening...too bizzare that I would read your post

today, and these were all discussed. I will also be meeting at the NIH on Monday

regarding these meds in relation to our seven year old son, Nino. Who currently

takes Mesasalamine and Infliximab, along iwht ohter meds....they are considering

adding Methotrexate but with his liver enzymes elevated, I don't think that is a

good idea. He has used Methotrexate in the past, and although, it greatly

helped with joint pain, it really hurt his belly and made matters worse!

I hope this helped and didn't confuse you more.....

Fran is a nurse and has tons of experience - medically....

Just wanted to share our info with you.

Best of luck...you are in a great place here!

Love and prayers,

Lori

grtax@... wrote:

I have been reading with great interest and excitement all of your

wonderful input and expierences. My mother was diagnosed with FMF back in the

1960s and was written up in a California medical journal. That was before we

knew about all of the other types of periodic fever syndromes, and we are

certain that she was misdiagnosed because she doesn't have all the classic

symptoms of FMF. My brother and I both have the same periodic fever syndrome

(unknown origin) and so do two of my three children (ages 13, 12 and 8...the two

older ones are afflicted). The symptoms include chills, fever, swollen lymph

nodes, joint aches, and lethargy (no rashes). My daughter also has severe

abdominal pain so we removed her appendix to rule out appendicitis. Tonsils and

adnoids were also removed from my children.

My 12-year old daughter gets a fever every 5-7 days and they last for 5 days. My

mother, brother, son and I get recurring fevers at least once a month. It has

been a rough ride and we have been at NIH (Dr. Kastner), UC, San Francisco and

UC, . We have also been in contact with Dr. Hal Hoffman at Scripps. My

mother has been on Colchicine for 40 years but it really doesn't help (she is

just too stubborn to stop taking it). NIH tried Enbrel on her (my mother is the

guinea pig in the family), but that didn't work. The latest I am hearing is that

Anakindra (a daily shot) is working wonders, so we are going to check that out

at UC, tomorrow. I don't believe, however, that it is suitable for

children. Does anyone have any expierience with Anakindra?

As many of you know, Prednisone seems to be a miracle drug with some of these

periodic fevers, but I have resisted it becuase of its ill-effects on the body,

especially in children. However, I can no longer resist the positive effects it

has on my kids and me. So, we started taking it last month at the onset of a

fever and it has really helped. I just want to use it as sparingly as possible.

I want to thank all of you for sharing your expieriences. For so long, I felt

like I was the only one going through what I go through as a working mother who

doesn't feel that great sometimes,whose kids get super sick very often, and

whose mother and brother go through so much pain.

Let's keep pushing the doctors for answers, keep trying new treatments, and

let's keep sharing.

in California

__________________________________________________________

Check out AOL.com today. Breaking news, video search, pictures, email and IM.

All on demand. Always Free.

[Guest guest]

Welcome and family

Ankarina is used mostly if you carry the CIAS1 mutation causing NOMID. There

is a group (and a few of the members from that group are here too). through

that is run by Kate Barton who has a son with NOMID. Wonderful group

and people. They are the " experts " regarding Ankarina. My son has a CIAS1

gene and he was misdiagnosed as for years, with changing clinical

diagnosis. Last Nov his DNA was sent off by Dr. Kastner for the CIAS1

mutation and surprised us coming back positive. However ph is NOT

typical NOMID as he does have chronic meningitis and the severe fevers with

joint pain and some neuro-cognitive issues. but many of the children with

NOMID when having an actual diagnosis have MUCH more severe symptoms, such

as mental retardation, boney deformities, skull deformities, blindness and

deafness along with significant rashes specific to the disorder.

The Ankarina was studied through research at NIH and has proven quite

effective for those children.

I believe Kastner is trying Ankarina, Remicade and other drugs on people

that do not " fall " under any diagnosis with a mutation.

The link to the NOMID group is:

nomidsyndrome/

In the event you want to get personal first hand info regarding Ankarina.

God Bless

Fran A Bulone

Mom to ph 7 yrs old

Waxhaw, NC

Owner & Moderator Group

<>

[Guest guest]

Hi Peyton!!

I just met with Dr. Groh last night and our plans are finalized....the

conference is set for Sept. 9and 10.

There will be discount hotel rates available and I will get you hotel

information w/in the next week. I am busy with The Nino Fund 5K run right now,

but will have the hotel deatils soon...I promise!!

there are new speakers this year...Dr, Holmes Morton(Geneticist), Dr.

Groh(Arthritis Management), myself(family life with PFS), Dr. Levi-TRAPS

specialist/Rheumotologist, Dr. Blackall-Psychiatrist-living with Chronic

Illness.

There will be many activities for children....they will be supervised while

parents attend seminars.

Lunch will again be provided. Also, that evening(Saturday), there will be a

pizza party for all families attending the conference.....swimming for the kid

too..at the host hotel. The next day there will be Hershey Park tickets

available at a discounted rate....for any family wanting to go to the amusement

park!!!!!!!!!!!!!

It will be AWESOME! Building each year!!

This year though, there will be a fee of $20 registration fee for each family

payable to The Nino Fund-PSHMC. It deosn't matter how many come, it's a flat

fee. This will give us a count of families attending to organize food, and

hotel accomodations.

I am working on getting the registration form linked to our website

www.a-journey.com and possibly Fran Bulone at the site will/can link

it to that site as well.

I am really looking forward to it....a little bigger than last year, more

stuff for the kids, more info for the parents, more family time

together......that's what it's all about.

Let me know if I can help with any new info. I will post the registration

form when it's available. Please share it with any of your Doctors/nurses that

may be interested in learning more abt these crazy PFS's..... Keep the faith

and always believe the best!

Love and prayers,

Lori

grtax@... wrote: I have been reading with great interest and

excitement all of your wonderful input and expierences. My mother was diagnosed

with FMF back in the 1960s and was written up in a California medical journal.

That was before we knew about all of the other types of periodic fever

syndromes, and we are certain that she was misdiagnosed because she doesn't have

all the classic symptoms of FMF. My brother and I both have the same periodic

fever syndrome (unknown origin) and so do two of my three children (ages 13, 12

and 8...the two older ones are afflicted). The symptoms include chills, fever,

swollen lymph nodes, joint aches, and lethargy (no rashes). My daughter also has

severe abdominal pain so we removed her appendix to rule out appendicitis.

Tonsils and adnoids were also removed from my children.

My 12-year old daughter gets a fever every 5-7 days and they last for 5 days. My

mother, brother, son and I get recurring fevers at least once a month. It has

been a rough ride and we have been at NIH (Dr. Kastner), UC, San Francisco and

UC, . We have also been in contact with Dr. Hal Hoffman at Scripps. My

mother has been on Colchicine for 40 years but it really doesn't help (she is

just too stubborn to stop taking it). NIH tried Enbrel on her (my mother is the

guinea pig in the family), but that didn't work. The latest I am hearing is that

Anakindra (a daily shot) is working wonders, so we are going to check that out

at UC, tomorrow. I don't believe, however, that it is suitable for

children. Does anyone have any expierience with Anakindra?

As many of you know, Prednisone seems to be a miracle drug with some of these

periodic fevers, but I have resisted it becuase of its ill-effects on the body,

especially in children. However, I can no longer resist the positive effects it

has on my kids and me. So, we started taking it last month at the onset of a

fever and it has really helped. I just want to use it as sparingly as possible.

I want to thank all of you for sharing your expieriences. For so long, I felt

like I was the only one going through what I go through as a working mother who

doesn't feel that great sometimes,whose kids get super sick very often, and

whose mother and brother go through so much pain.

Let's keep pushing the doctors for answers, keep trying new treatments, and

let's keep sharing.

in California

__________________________________________________________

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[Guest guest]

Hiya Lori

I'm , mum to Sam (4) with , at present, 'periodic fever of unknown

origin'!

Please can you tell me more about the conference...we are in UK nd still

pretty green about where we shoud be going. Little expertise in UK about PF's

and feeling like Sam is a Guinea Pig! Wouldlove to learn more....wondering if

this forum would benefit us?

Love

Lori Todaro <loritodaro@...> wrote:

Hi Peyton!!

I just met with Dr. Groh last night and our plans are finalized....the

conference is set for Sept. 9and 10.

There will be discount hotel rates available and I will get you hotel

information w/in the next week. I am busy with The Nino Fund 5K run right now,

but will have the hotel deatils soon...I promise!!

there are new speakers this year...Dr, Holmes Morton(Geneticist), Dr.

Groh(Arthritis Management), myself(family life with PFS), Dr. Levi-TRAPS

specialist/Rheumotologist, Dr. Blackall-Psychiatrist-living with Chronic

Illness.

There will be many activities for children....they will be supervised while

parents attend seminars.

Lunch will again be provided. Also, that evening(Saturday), there will be a

pizza party for all families attending the conference.....swimming for the kid

too..at the host hotel. The next day there will be Hershey Park tickets

available at a discounted rate....for any family wanting to go to the amusement

park!!!!!!!!!!!!!

It will be AWESOME! Building each year!!

This year though, there will be a fee of $20 registration fee for each family

payable to The Nino Fund-PSHMC. It deosn't matter how many come, it's a flat

fee. This will give us a count of families attending to organize food, and hotel

accomodations.

I am working on getting the registration form linked to our website

www.a-journey.com and possibly Fran Bulone at the site will/can link

it to that site as well.

I am really looking forward to it....a little bigger than last year, more stuff

for the kids, more info for the parents, more family time together......that's

what it's all about.

Let me know if I can help with any new info. I will post the registration form

when it's available. Please share it with any of your Doctors/nurses that may be

interested in learning more abt these crazy PFS's..... Keep the faith and always

believe the best!

Love and prayers,

Lori

grtax@... wrote: I have been reading with great interest and excitement all

of your wonderful input and expierences. My mother was diagnosed with FMF back

in the 1960s and was written up in a California medical journal. That was before

we knew about all of the other types of periodic fever syndromes, and we are

certain that she was misdiagnosed because she doesn't have all the classic

symptoms of FMF. My brother and I both have the same periodic fever syndrome

(unknown origin) and so do two of my three children (ages 13, 12 and 8...the two

older ones are afflicted). The symptoms include chills, fever, swollen lymph

nodes, joint aches, and lethargy (no rashes). My daughter also has severe

abdominal pain so we removed her appendix to rule out appendicitis. Tonsils and

adnoids were also removed from my children.

My 12-year old daughter gets a fever every 5-7 days and they last for 5 days. My

mother, brother, son and I get recurring fevers at least once a month. It has

been a rough ride and we have been at NIH (Dr. Kastner), UC, San Francisco and

UC, . We have also been in contact with Dr. Hal Hoffman at Scripps. My

mother has been on Colchicine for 40 years but it really doesn't help (she is

just too stubborn to stop taking it). NIH tried Enbrel on her (my mother is the

guinea pig in the family), but that didn't work. The latest I am hearing is that

Anakindra (a daily shot) is working wonders, so we are going to check that out

at UC, tomorrow. I don't believe, however, that it is suitable for

children. Does anyone have any expierience with Anakindra?

As many of you know, Prednisone seems to be a miracle drug with some of these

periodic fevers, but I have resisted it becuase of its ill-effects on the body,

especially in children. However, I can no longer resist the positive effects it

has on my kids and me. So, we started taking it last month at the onset of a

fever and it has really helped. I just want to use it as sparingly as possible.

I want to thank all of you for sharing your expieriences. For so long, I felt

like I was the only one going through what I go through as a working mother who

doesn't feel that great sometimes,whose kids get super sick very often, and

whose mother and brother go through so much pain.

Let's keep pushing the doctors for answers, keep trying new treatments, and

let's keep sharing.

in California

__________________________________________________________

Check out AOL.com today. Breaking news, video search, pictures, email and IM.

All on demand. Always Free.

[Guest guest]

hi tyisha welcome to our group. congrats on your up coming wedding. 40lbs is a big goal for such a short amount of time. but one step to getting in to shape is to get up and do it. even if you start with walking and work up from there. baby steps, gradually adding in more time,faster paces,and doing inclines(esp. if you use a treadmill).you have to watch what you eat, even writing every single bite down to see where you can cut out or replace with something healtheir. fresh veggies and fruits are always my options. i don't even measure out anymore. if i am in a snacking mood, i keep a big bowl of apples and/or oranges on my dining room table. they make it look pretty but also remind me to grab something full of fiber and nutrients instead of reaching for the cheez-its. all my protiens are lean cuts of red meat. the more expensive the cut is actually not always the better for me b/c it seems the cheaper cuts liek round steak, have

more iron which i am anemeic so i battle with that. i also eat ONLY chicken breast. very very rarely will i eat dark meat. and if i have pork i buy a pork loin and have the butcher cut it into center cut chops. a nice 4oz piece gives me plently of iron,protien and is leaner,juicer, and much better texture wise. for grains i stick with oatmeal,coucous, brown rice(rarely eat rice but brown is much nuttier flavor), but i will admit i don't always eat wheat pasta. i read labels carefully to see what ingredients are, nothing with corn syrup,fructose, or anything else that calls itself anything but sugar. since i have been more vigalinte with this i have lost some inches and seeing better definition in my abs. now that i bored you with eating tips LOL(its very important your eating habits, they make up 85% part of a healthy lifestyle).we can move onto workouts. with working out you have to take it slow. don't try to do more then you can, and

importantly take rest days. rest days are just as important giving your body the chance to recover from all your hardwork. overtaining will just tire your body out and you will wind up sick and injured. stick with low impact cardio or even walking. light-moderate weights will help sculpt your muscles and also more lean muscle you have the better the calorie burn at rest. cardio will help your heart,speed up weight and fat loss, and it really can be relaxing to just workout and giving yourself time for you. no matter how long or short that is. now its up do you on what kind of workouts you like to do. is it kickboxing,dance,step workouts. see if you local library has some workout dvds/videos that you can try out. even take out some books for weight training(or even workouts using bands,tubing, medicine balls, etc will work. anything with resistance will work the muscles) b/c they also give tips for eating clean and

give you routines for up to 12 weeks so it would take the confusion out of putting together a plan yourself.one of my favorites was shape training. it was training for you body shape. like i am heavier on the bottom so twice a week i would work legs with moderate to light weights with higher reps and lots of cardio while another 2 days a week i would upper body with heavy weights. all while mixing up types of cardio for fat loss and heart health. did i help any LOL, its hard for me to come up with something for others without knowing them but i hope some of these tips can help get you started, we also have some personal trainiers in the group so i hope, if they are available(i know tonya is not around right now), they can give you more professional answers on the subject. kassia tyisha_monet <dallascowboy_honey@...> wrote:

Hello everyone I am trying very hard to get back in shape. I am getting married on July 7, 2007 and I would like to look good in my wedding dress even though my man says that I don't need to lose weight but for my health and my self-esteem I will like to lose 40lbs. If you all know what I can do to help PLEASE HELP ME!!!!

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

On 5/4/07, tyisha_monet <dallascowboy_honey@...> wrote:

> Hello everyone I am trying very hard to get back in shape. I am

> getting married on July 7, 2007 and I would like to look good in my

> wedding dress even though my man says that I don't need to lose weight

> but for my health and my self-esteem I will like to lose 40lbs. If you

> all know what I can do to help PLEASE HELP ME!!!!

Welcome to the group, Tyisha, and congratulations on your upcoming

wedding! It's great that your fiance likes you just as you are-- that

bodes very well for your future together-- but I understand your urge

to look and feel the best you can.

Kassia has already given you great advice, so I won't repeat what

she's said. If you follow her suggestions, you can't go wrong. What

I'll add is to urge you not to focus too much on the Big Goal-- the 40

lbs. That can be overwhelming and get discouraging on days when you

have a bad case of " fat eyes " or life's getting stressful. Instead,

try to concentrate on making The Best Choice Right Now.

Really, in that very moment, think-- what is the healthiest thing I

can do right now? Fitness really is earned moment by moment.

For me, too, it was a real momentous change when I decided that just

like brushing my teeth or changing my underwear, exercise needed to be

a non-negotiable activity. Six days a week, I'm doing something to

move and strengthen my body. That activity has changed over the year

and a half or so I've been exercising, and I've tried and discarded a

lot of things that I didn't enjoy-- but I've kept at it, and kept

coming back to it, and that's made the difference.

Another suggestion I got that was golden, is on days when I just don't

feel like working out (not when one is truly ill, just fatigued, or

bleh-- you know those days) to go ahead and start working out. Tell

yourself you can quit after the warm up, or after 15 minutes or some

such.

I can honestly say, that every time I've used that little ploy, save

once, it's worked. By the time I reached my " I can quit now " point, I

no longer felt like quitting! The one time I did, was when I had

overworked (in my job) for the day or two before and just honestly

didn't have the physical energy to exercise.

Don't be afraid to try new things, and also don't be afraid to move on

to something else if you really loathe the new thing, or you just get

tired of it after a while. Videofitness.com is a great resource to

join, because they have a trade forum where you can swap videos or

even get some just for sending a stamped, self-addressed envelope.

We do that here, at times, too-- just don't have a formal forum set up

for it like they do over there.

Let's see... what else? Biggie: DON " T focus entirely on the number on

the scale! In fact, if you can avoid stepping on the scale for a

while, that'd be even better. The tape measure and your own clothes

are more faithful indicators of progress. And how you feel... write

down how you feel after workout 1, and then compare that to how you

feel after workout 30. I guarantee, you'll be amazed at how far you've

come!

There's more technical stuff like using a heart-rate monitor and

checking your resting pulse rate that can give you other feedback on

progress, but it's not really necessary.

Remember, a pound of muscle and a pound of fat both weigh one pound,

but it's like comparing a pound of wet sand to a pound of popped

popcorn. In fact, I think there's a photo in the files of this group

that shows a model of an lb. of fat lying beside an lb. of muscle.

This is just one of the reasons why the scale can be as much a

discouragement as a help.

So, do cardio, but build strength, too! Ok, I'm wandering into an

area Kassia already covered very well, so I'll hush. Except to add

that I've got a list of VHS tapes in the files that I'd be happy to

send you for an SASE or box, if there's any that interest you.

Again, welcome! Keep us posted on how you're doing, and always feel

free to ask any question or voice any vent! :-)

Tess

--

" ...I am too many this morning... "

Lessa

~Dragonflight~

[Guest guest]

Hi Tyisha, Welcome to the group. I think the best position to be in is when u r loosing weight for yourself, not to please someone else. I think the best way is to commit to a lifestyle change instead of dieting. Also exercise videos can be good because u can do them in the privacy of ur own home and on ur own time. It is very helpful to try and do something that u enjoy when exercising. If u hate the workout it makes it that much harder to motivate yourself. Always look on the positive side no matter what. Each day is a new beginning so if u didn't get done what u planned there is always tomorrow to re-commit. Dityisha_monet <dallascowboy_honey@...> wrote: Hello everyone I am trying very hard to get back in shape. I am getting married on July 7, 2007 and I would like to look good in my wedding dress even though my man says that I don't need to lose weight but for my health and my self-esteem I will like to lose 40lbs. If you all know what I can do to help PLEASE HELP ME!!!!

Expecting? Get great news right away with email Auto-Check.Try the Beta.

[Guest guest]

In a message dated 5/4/2007 8:00:29 P.M. US Eastern Standard Time, dallascowboy_honey@... writes:

If you all know what I can do to help PLEASE HELP ME!!!!

Hi, welcome to the list. Most of us here workout each day and post our workouts. Please join in!!

*~**~*See what's free at AOL.com.

[Guest guest]

Welcome, and know that this group loves new ideas for using sprouts in recipes.

We welcome your participation and input. Have a healthy and happy leap year!

healthylife4god <healthylife4god@...> wrote: Hi

I am new to sprouting. I recently read an article in yoga journal

magazine that got me interested. I love to garden and am not able to

now in my new home so this is a great way for me to " garden " inside. I

have started my first sprouting in a sprouting jar using alfafa seeds.

They are looking good and I am excited.

I'm looking forward to learning more from you all that have been doing

this for a while. Thanks!

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

>>>>Is it Ok to drink some of the first

batch?>>>

I did. Even though it is not completely kefir yet there are still some great

probiotics in it. If the milk you used was safe to drink the kefir grains

only added to the goodness. Nothing is spoiled.

So, if youre okay with the taste, I would certainly go for it. You can even

make it into a smoothie with other fruits etc that will balance the sour

taste.

.....sharon

[Guest guest]

Remember that using raw whole cow's milk is the best way.  It can't go rancid,

only sour.  Sour milk is safe to drink, and can be the basis of sour cream, sour

milk dressing, etc. Try to find a farmer to give you raw milk.  It is so good

for you!  Weston A. Price Foundation has the Campaign for real milk, and can

help you locate raw milk groups in your area.  Good luck.

[Guest guest]

WELCOME TO THE GROUP..MARTINA;; IM SORRY THAT YOU HAVE SO MUCH GOING ON WITH YOUR HEALTH ;;SO GLAD YOU FOUND US;; THERE ARE LOTS OF FOLKS HERE WHO SUFFER WITH MANY AILMENTS;; LOTS OF LISTENING & SUPPORT HERE & GOOD INFO;; YOU TAKE CARE

HUGS

FROM DORT FROM MICH;;U.S.A.

From: a <mhmilligan1977@...>Subject: I'm New Date: Saturday, September 13, 2008, 5:01 AM

My name is a and i have the following Medical conditionsType 2 Diabetes,Diabetic Kidney Disease,Enlarged KidneysEnlarged SpleenAsthma,Osteoarthritis of my knees and hands,Polycystic Ovarian Syndrome,Fatty Liver,GED/Heartburn,Hypothyroid,Obstructive Sleep Apnea,Iirritable bowel syndrome,Petit Mal Seizures,High Cholesterol,Depression,Bi-polor,Carpal Tunnel,Developmently DelayedChronic Sinusitisr of the Eye Disease: Retina Pigmonta(RP)I found out today i had the Enlarged Kidneys and Spleen and i amscared out of my mind and need support thanksCan anyone explain to me what the Spleen does? please and thanksHugsa

[Guest guest]

Good morning, Caren;

Glad to know you are here with us. We are all working on the same team,

trying to support each other in our journey. Your presence here is a help to

all of us.

Congratulations on joining Curves. As far as I'm concerned any workout is a

good workout. Someone here once posted this quote " you never regret the runs

you do and you always regret the runs you don't do " . It's the same with

workouts of any kind, so be very proud of yourself. DON'T ever put yourself

down and denigrate the intensity of your workout at Curves. You're doing it!

BE PROUD!

Take care,

Wynn

I'm new

> Hi, I'm Caren. I've been lurking around for a while. I've been a little

> confused about how to read the posts, trying to decipher who's voice is

> who's. I'm stopping by to introduce myself, and say " Hi " to you all.

>

> I'm currently doing the workbook & listening to the podcasts. I'm on

> chapter 4. I listen daily, sometimes several times. I even wake up in the

> middle of the night to listen & fall back to sleep. I've worked on my

> " toward " and " away from " motivation.

>

> I started going to Curves gym on Tuesday & have gone 3 days in a row. It's

> not a very strenuous workout, but I do work up a sweat. I see it as a

> stepping stone to more challenges.

>

> I'm 49, married with 3 sons. I'm at my highest weight ever. It's the outer

> symptom of my inner depression. But I reached the point where my fat

> clothes don't even fit me. I decided to trade my fat armor for mental

> armor. Life is hard, and I need some protection, but the fat just does

> more harm than good I decided.

>

>

>

>

>

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

>

> Copyright 2005-2007. A. s. All worldwide rights

> reserved.

[Guest guest]

Hi Caren! Welcome. I look forward to sharing your journey with you.

[Guest guest]

Welcome Caren! Great job for getting to Curves and going 3 days in a row! Its

great that you are doing the workbook. I suggest doing the homework. I didn't

always at first and once I did I got more out of it. Also coming here helps me

get a lot out of the program as well-so be sure to visit whenever you need extra

support!

The message format is a little tricky, I usually go down to the bottom of each

message where you see an overview of the message and all responses to it. But

its not the most user friendly but you get used to it!

~

>

> Hi, I'm Caren. I've been lurking around for a while. I've been a little

confused about how to read the posts, trying to decipher who's voice is who's.

I'm stopping by to introduce myself, and say " Hi " to you all.

>

> I'm currently doing the workbook & listening to the podcasts. I'm on chapter

4. I listen daily, sometimes several times. I even wake up in the middle of the

night to listen & fall back to sleep. I've worked on my " toward " and " away from "

motivation.

>

> I started going to Curves gym on Tuesday & have gone 3 days in a row. It's not

a very strenuous workout, but I do work up a sweat. I see it as a stepping stone

to more challenges.

>

> I'm 49, married with 3 sons. I'm at my highest weight ever. It's the outer

symptom of my inner depression. But I reached the point where my fat clothes

don't even fit me. I decided to trade my fat armor for mental armor. Life is

hard, and I need some protection, but the fat just does more harm than good I

decided.

>

[Guest guest]

Thanks for the warm welcome everyone!

, I am doing the homework, in fact I'm printing out ch 5-6 now. I like

thinking about the different parts of me, and I want to draw them in a story

board.

Wynn, I've gone to Curves 4 days in a row now, they're closed weekends. I'm

proud of going, but it seems to be all older ladies, and although I'm pushing

50, I feel like I'm in my extremely late 30s.

Caren

>

> Good morning, Caren;

> Glad to know you are here with us. We are all working on the same team,

> trying to support each other in our journey. Your presence here is a help to

> all of us.

> Congratulations on joining Curves. As far as I'm concerned any workout is a

> good workout. Someone here once posted this quote " you never regret the runs

> you do and you always regret the runs you don't do " . It's the same with

> workouts of any kind, so be very proud of yourself. DON'T ever put yourself

> down and denigrate the intensity of your workout at Curves. You're doing it!

> BE PROUD!

> Take care,

> Wynn

> I'm new

>

>

> > Hi, I'm Caren. I've been lurking around for a while. I've been a little

> > confused about how to read the posts, trying to decipher who's voice is

> > who's. I'm stopping by to introduce myself, and say " Hi " to you all.

> >

> > I'm currently doing the workbook & listening to the podcasts. I'm on

> > chapter 4. I listen daily, sometimes several times. I even wake up in the

> > middle of the night to listen & fall back to sleep. I've worked on my

> > " toward " and " away from " motivation.

> >

> > I started going to Curves gym on Tuesday & have gone 3 days in a row. It's

> > not a very strenuous workout, but I do work up a sweat. I see it as a

> > stepping stone to more challenges.

> >

> > I'm 49, married with 3 sons. I'm at my highest weight ever. It's the outer

> > symptom of my inner depression. But I reached the point where my fat

> > clothes don't even fit me. I decided to trade my fat armor for mental

> > armor. Life is hard, and I need some protection, but the fat just does

> > more harm than good I decided.

> >

> >

> >

> >

> >

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

> >

> > Copyright 2005-2007. A. s. All worldwide rights

> > reserved.

[Guest guest]

Caren;

I go to an exercise class twice a week that has every age and every ability,

but believe me, I work hard when I'm there. I'm probably one of the oldest,

but definitely not the weakest. You get out what you put in, and you are

also an inspiration to every one who is working out alongside of you. Try

not to compare yourself with the others, you are doing this for you and you

alone, but be aware that you inspire us and everyone who needs the support

and inspiration to add some workouts to their lives because you are DOING

IT!

I congratulate you!

Take care,

Wynn

I'm new

>>

>>

>> > Hi, I'm Caren. I've been lurking around for a while. I've been a little

>> > confused about how to read the posts, trying to decipher who's voice is

>> > who's. I'm stopping by to introduce myself, and say " Hi " to you all.

>> >

>> > I'm currently doing the workbook & listening to the podcasts. I'm on

>> > chapter 4. I listen daily, sometimes several times. I even wake up in

>> > the

>> > middle of the night to listen & fall back to sleep. I've worked on my

>> > " toward " and " away from " motivation.

>> >

>> > I started going to Curves gym on Tuesday & have gone 3 days in a row.

>> > It's

>> > not a very strenuous workout, but I do work up a sweat. I see it as a

>> > stepping stone to more challenges.

>> >

>> > I'm 49, married with 3 sons. I'm at my highest weight ever. It's the

>> > outer

>> > symptom of my inner depression. But I reached the point where my fat

>> > clothes don't even fit me. I decided to trade my fat armor for mental

>> > armor. Life is hard, and I need some protection, but the fat just does

>> > more harm than good I decided.

>> >

>> >

>> >

>> >

>> >

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

>> >

>> > Copyright 2005-2007. A. s. All worldwide rights

>> > reserved.