I'm new

June 17, 2005

HI WELCOME I ALSO HAVE PAIN IN MY LEFT JAW SO FAR NO PROBLEM WITH RIGHT SIDE

JULIE

June 17, 2005

Welcome to or Group I have problems with my jaw at times never have been told it

was tmj.

Enjoy your stay in seattle

Trudy

jmorob@... wrote:

Hello Group

I am new and have suffered with rheumatoid arthritis for the last ten years.

It started very slowly and then came on like gang busters. I currently take

methotrexate as well as enbrel but have gone through the gamut of medicines in

the past. For flare ups I usually take prednisone. I still work (I teach) and

there is not much time to write but I will try and offer help when I can.

One of my big problems is TMJ. I haven't heard anyone mention this.

Steroid injections have helped but I pretty much have constant pain on the left

side of my jaw. An MRI showed deterioration on both sides.

Currently, I am visiting my daughter in Seattle and over did the

walking. I'm paying for it now with lots of aches and pain but it was worth it.

Take Care

Babs

June 17, 2005

Welcome Babs,

I have had TMJ pain, but not lately. I'm sorry that you have it quite

a bit, it's so painful.

Glad your here, and can't wait to know more about you.

Hugs, Tawny

> Hello Group

>

> I am new and have suffered with rheumatoid arthritis for the last

ten years.

> It started very slowly and then came on like gang busters. I

currently take

> methotrexate as well as enbrel but have gone through the gamut of

medicines in

> the past. For flare ups I usually take prednisone. I still work (I

teach) and

> there is not much time to write but I will try and offer help when

I can.

> One of my big problems is TMJ. I haven't heard anyone mention

this.

> Steroid injections have helped but I pretty much have constant pain

on the left

> side of my jaw. An MRI showed deterioration on both sides.

> Currently, I am visiting my daughter in Seattle and over did

the

> walking. I'm paying for it now with lots of aches and pain but it

was worth it.

>

> Take Care

> Babs

>

June 20, 2005

Babs,

I have TMJ, but it is a result of an accident, not RA. TMJ sure

changes the way we eat.

I'm glad you had a nice time with your daughter, and hope those aches

and pains leave quickly.

a

On Jun 17, 2005, at 1:24 PM, jmorob@... wrote:

> Hello Group

>

> I am new and have suffered with rheumatoid arthritis for the last ten

> years.

> It started very slowly and then came on like gang busters. I

> currently take

> methotrexate as well as enbrel but have gone through the gamut of

> medicines in

> the past. For flare ups I usually take prednisone. I still work (I

> teach) and

> there is not much time to write but I will try and offer help when I

> can.

> One of my big problems is TMJ. I haven't heard anyone mention

> this.

> Steroid injections have helped but I pretty much have constant pain

> on the left

> side of my jaw. An MRI showed deterioration on both sides.

> Currently, I am visiting my daughter in Seattle and over did the

> walking. I'm paying for it now with lots of aches and pain but it was

> worth it.

>

> Take Care

> Babs

>

June 20, 2005

Hello and welcome,

We have a folder on decorating the bands in our files section here,

you can also look in the photo section under plagiokids to see some of

the different bands and how they were done. I have not seen a band

done this way, but that doesn't mean it hasn't been done. How old is

the baby and what kind of band does she have? You can make her a

folder in the plagiokids section to post pictures once you get her

band decorated, we love to see them.

CAROLG

> Hi, I am new here. We just started the treatment series with our

> orthotist to get my daughter a head-band. She has positional

> plagiocephaly as well as the associated brachycephaly. She just got

> her head mold done on Friday, and we will be starting the fittings

> soon. I would like to know what different decorating concepts

anyone

> has come up with. One of our options is having fabric cover the

> exterior of the helmet/band, and then it would be laminated. If

> anyone did have this done, how did it work out for you, and if there

> are some other ideas I would love to hear them. Thanks.

June 20, 2005

Hello and welcome,

We have a folder on decorating the bands in our files section here,

you can also look in the photo section under plagiokids to see some of

the different bands and how they were done. I have not seen a band

done this way, but that doesn't mean it hasn't been done. How old is

the baby and what kind of band does she have? You can make her a

folder in the plagiokids section to post pictures once you get her

band decorated, we love to see them.

CAROLG

> Hi, I am new here. We just started the treatment series with our

> orthotist to get my daughter a head-band. She has positional

> plagiocephaly as well as the associated brachycephaly. She just got

> her head mold done on Friday, and we will be starting the fittings

> soon. I would like to know what different decorating concepts

anyone

> has come up with. One of our options is having fabric cover the

> exterior of the helmet/band, and then it would be laminated. If

> anyone did have this done, how did it work out for you, and if there

> are some other ideas I would love to hear them. Thanks.

August 15, 2005

Welcome to the list. Over the years, since my son's diagnosis (Oct. 2000), it

has been a wonderful source of comfort, great advice, and lots of knowledge for

me. Ask any questions you may have and I am sure someone will have some

experience with it. If not, at least, it is a safe place to vent amongst other

parents (and adults with JRA) - people who truly get how you feel. Michele

( 18, pauci & spondy)

I'm new

Hi,

This is very new for me, joining a list. I heard about it at the AJAO

conference in Providence, so I thought I might try it out. I have

three kids; an 11 year old girl, an 8 year old boy with polyarticular

JRA, and A 4 year old boy. I did not know any other children with JRA

until we went to the conference. What a wonderful thing it was to meet

other people, I don't feel quite so isolated. Although, now that I am

home, I kinda feel that way again.

So, I just wanted to introduce myself and see what happens.

Mamahala

August 18, 2005

Hi Mamahala,

I was at the conference. Did you pick up on this list during the

final " mothers' meeting " ? There were several of us that are on this

list that were present for that. Welcome and I'm glad you took the

steps to join us.

My 3 kids were with us at the conf. and my 8 year old daughter must

have been in the same class as your son. Her name is andra and

she hung around with a girl named Meghan. See if he remembers them.

I found this list 6 months after our diagnosis and about 4 years

after first systemic symptoms. I sure wish I had known about it

before because what I know now from experience and this list could

have saved me some anguish and provided a ton of support. Those

first 6 months after diagnosis were the darkest for us and I pray we

can help prevent anyone else from feeling alone. You're not alone

when you're here!!

Let us know more about your son and how he is doing?

Stacia and Hunter 9 systemic, iritis

August 22, 2005

Hello!

Heterochromia is nothing to be ashamed about, although I can understand your

fears. Its hard being different, but like it seems your friends and family

understand already, sometimes being different is beautiful. If you haven't

done so already, check out the photos section of the groups website and you

will see a wide variety of types of Heterochromia, and every one is pretty.

You were lucky to have such a blessed childhood. Many of us were

teased because

of our eyes growing up, and it wasn't until later that we felt accepted by our

peers.

Please don't feel ashamed about your eyes. Post a pic so we can see

how lovely

they are. And I'd like also to see a pic of your contacts in, to see how

closely you were able to match.

Thanks for sharing!

___________________________________________________

Kathleen

Quoting shiptheta <shiptheta@...>:

> I am new to this group. I, of course, have lived with this condition

> most of my life. Three years ago, I had custom lenses made, but it is

> very difficult to get a good match.

>

> I have always hated it....and have never come to terms with it. Does

> anyone else feel this way?

>

> Interestingly, everybody else in my life loved it. I was not made fun

> of in school and was active, popular, etc... I, though, have

> internalized this and it definitely contributed to anxiety with

> meeting new people, etc.

>

> I am 35 now...anyone's thoughts? It took a lot for me to do this, as I

> do not talk about it ever.

>

August 23, 2005

A couple years ago i went to a Mac makeup counter in a fancy department store

and said " I need some new colors that make me look good " and the woman couldnt

get over my eyes. Although at the time i was looking for a good business

casual kind of look, I came out looking fairly glamorous, with a dark purple

( " prunella " ) eye liner, a light metalic gold eye shadow, a lipstick called O

that looks like a maroon with copper in it, paired with a plum lipliner. it

sounds weird, but it really brings out my features (i have fair skin) and my

eyes just pop out at you. I love it.

___________________________________________________

Kathleen

Quoting " W.H.L. Walravens " <eyeztwo@...>:

> Yes now I'm old & sometimes wise I prefer natural colors, but when

> you are 15, you want what is in fashion, in the 80's that was blue,

> green etc......... with one green en one blue eye....it didn't match

> always...

>

August 23, 2005

Yep, Mac is where I get all my fun colors and they were the ones to teach me not to fear color <amianda@...> wrote:

A couple years ago i went to a Mac makeup counter in a fancy department storeand said "I need some new colors that make me look good" and the woman couldntget over my eyes. Although at the time i was looking for a good businesscasual kind of look, I came out looking fairly glamorous, with a dark purple("prunella") eye liner, a light metalic gold eye shadow, a lipstick called Othat looks like a maroon with copper in it, paired with a plum lipliner. itsounds weird, but it really brings out my features (i have fair skin) and myeyes just pop out at you. I love it.___________________________________________________ KathleenQuoting "W.H.L. Walravens" <eyeztwo@...>:> Yes now I'm old & sometimes wise I prefer natural colors, but when > you are 15, you want what is in fashion, in

the 80's that was blue, > green etc......... with one green en one blue eye....it didn't match > always...>>

August 24, 2005

The Guerlain lady made me over with the same look!!!!!!!!!!!!!!!!!!!! It is now my glam look...my work look is tuned down with only black mascara ( I have big eyelashes so it 's enough to pop out my eyes) brown/pinkish blush and orange/brown lippy....looks great with my freckeled fair skin and dark brown curly hair. You would think that that "attrack" people to mine lips, but is the opposite. <amianda@...> wrote:

A couple years ago i went to a Mac makeup counter in a fancy department storeand said "I need some new colors that make me look good" and the woman couldntget over my eyes. Although at the time i was looking for a good businesscasual kind of look, I came out looking fairly glamorous, with a dark purple("prunella") eye liner, a light metalic gold eye shadow, a lipstick called Othat looks like a maroon with copper in it, paired with a plum lipliner. itsounds weird, but it really brings out my features (i have fair skin) and myeyes just pop out at you. I love it.___________________________________________________ KathleenQuoting "W.H.L. Walravens" <eyeztwo@...>:> Yes now I'm old & sometimes wise I prefer natural colors, but when > you are 15, you want what is in fashion, in

the 80's that was blue, > green etc......... with one green en one blue eye....it didn't match > always...>>

Start your day with - make it your home page

September 9, 2005

Hi .

Having a chronic disease is very disheartening, and you must accept the fact that you will feel discouraged. However you can not give into that feeling. The people in this discussion group are great at letting you know how to keep up your spirits and keep going. Just yesterday Jj Cathcart had posted an email that was full of good suggestions. I even printed it out and will read it every night. I tend to become negative when things do not go well for me.

I will post it again, in case you did not get yesterdays emails.

Welcome to the group, and keep on fighting!

Clara

[ ] I'm New

Hi Everyone,My name is , I'm 49 years old and last Oct. I was diagnosed with PBC [Primary Biliary Cirrohoses].When I was diagnosed it was actually a relief for me, because it took a year of tests and labs for my primary dr. to rule out other causes.{had no insurance}the liver biospy was the last chance to find out why my enzimes were so high, cause my liver ultrasound [2] and CT scan showed normal liver. Also I had no symptoms. At least not the symptoms they thought I'd have. Now that next month will be a year I am feeling down in the dumps, anger, and feel like a burden to my family. Is this normal after a year? I'm getting the muscles and joint pain and cranky all the time. I'm married 32 years, have 4 kids and 6 grand kids. I really think I'm mad at myself because my grandkids are my heart and now I don't have the energy for them like I used too. Anyway, I'm happy to be on board and I guess I'm just venting.

September 11, 2005

Hi ,

I was ill with PBC in my 30's when my children were small. I learned

to pace myself so that I had all of my energy available to them when

they were home from school. I managed to do all the mom things right

up until I had my transplant so just try to take it easy if you can

when your grandchildren aren't around so that you can give them your

maximum attention when they are.

I had my transplant at 38 and am now 54. My daughters are 27 and 22

and I'm expecting my first grandchild in mid-December. I'm so excited

and no more fatigue to deal with!

Take care,

Amsterdam, Netherlands

tx: 18 mar 1990

>Hi Everyone,

>My name is , I'm 49 years old and last Oct. I was diagnosed with

>PBC [Primary Biliary Cirrohoses].When I was diagnosed it was actually

>a relief for me, because it took a year of tests and labs for my

>primary dr. to rule out other causes.{had no insurance}the liver

>biospy was the last chance to find out why my enzimes were so high,

>cause my liver ultrasound [2] and CT scan showed normal liver. Also I

>had no symptoms. At least not the symptoms they thought I'd have. Now

>that next month will be a year I am feeling down in the dumps, anger,

>and feel like a burden to my family. Is this normal after a year? I'm

>getting the muscles and joint pain and cranky all the time. I'm

>married 32 years, have 4 kids and 6 grand kids. I really think I'm mad

>at myself because my grandkids are my heart and now I don't have the

>energy for them like I used too. Anyway, I'm happy to be on board and

>I guess I'm just venting.

>

September 13, 2005

-Hi Diane, Thanks for responding. And for the encourgement.

Grandchildren are so wonderfull, and congratulations on your

expecting grandchild.I took your advice, and last night I actually

got on the floor with my 18 month old granddaughter and played and

rolled around with her, it ended up a " Good " tired,as well as a good

time. Also thank you to all of you for the warm welcome. ,

Florida -- In , " D. "

<watson@e...> wrote:

> Hi ,

> I was ill with PBC in my 30's when my children were small. I

learned

> to pace myself so that I had all of my energy available to them

when

> they were home from school. I managed to do all the mom things

right

> up until I had my transplant so just try to take it easy if you can

> when your grandchildren aren't around so that you can give them

your

> maximum attention when they are.

> I had my transplant at 38 and am now 54. My daughters are 27 and 22

> and I'm expecting my first grandchild in mid-December. I'm so

excited

> and no more fatigue to deal with!

> Take care,

>

> Amsterdam, Netherlands

> tx: 18 mar 1990

>

> >Hi Everyone,

> >My name is , I'm 49 years old and last Oct. I was diagnosed

with

> >PBC [Primary Biliary Cirrohoses].When I was diagnosed it was

actually

> >a relief for me, because it took a year of tests and labs for my

> >primary dr. to rule out other causes.{had no insurance}the liver

> >biospy was the last chance to find out why my enzimes were so high,

> >cause my liver ultrasound [2] and CT scan showed normal liver.

Also I

> >had no symptoms. At least not the symptoms they thought I'd have.

Now

> >that next month will be a year I am feeling down in the dumps,

anger,

> >and feel like a burden to my family. Is this normal after a year?

I'm

> >getting the muscles and joint pain and cranky all the time. I'm

> >married 32 years, have 4 kids and 6 grand kids. I really think I'm

mad

> >at myself because my grandkids are my heart and now I don't have

the

> >energy for them like I used too. Anyway, I'm happy to be on board

and

> >I guess I'm just venting.

> >

September 13, 2005

Hi ! Welcome. I am rather new to this group too, but I have already learned so much. They has armed me with questions to ask my doctors! Just reading the posts from others is an education!! Elliegreeneyes732002 <greeneyes732002@...> wrote:

Hi Everyone,My name is , I'm 49 years old and last Oct. I was diagnosed with PBC [Primary Biliary Cirrohoses].When I was diagnosed it was actually a relief for me, because it took a year of tests and labs for my primary dr. to rule out other causes.{had no insurance}the liver biospy was the last chance to find out why my enzimes were so high, cause my liver ultrasound [2] and CT scan showed normal liver. Also I had no symptoms. At least not the symptoms they thought I'd have. Now that next month will be a year I am feeling down in the dumps, anger, and feel like a burden to my family. Is this normal after a year? I'm getting the muscles and joint pain and cranky all the time. I'm married 32 years, have 4 kids and 6 grand kids. I really think I'm mad at myself because my grandkids are my heart and now I don't have the energy

for them like I used too. Anyway, I'm happy to be on board and I guess I'm just venting.

for Good Click here to donate to the Hurricane Katrina relief effort.

October 21, 2005

Hi Lori,

Welcome to the group! There are some very helpful and experienced

people here that have helped me along the way. I was recently

implanted in September, activated on the 21st and it is going

wonderfully for me!

I grew up deaf, have a deaf sister, and am married to deaf man. I am

also a teacher assistant for deaf/hh children in a public school.

You are doing the best thing for Karleigh in that you are using ASL

with her. Language is a critical part of childrens lives, beginning at

birth. With the absence of hearing, it is so important that she have a

means of communication. Because you are signing to her, she should be

able to develop her language skills, through sign and later, verbally.

Did you know that even hearing babies who are exposed to sign language

from birth can have IQ's on average, 15 points higher than babies not

exposed to sign language? Since motor skills develop prior to verbal

skills, infants realize that all that crying is unnecessary if they

can get the message across! I have seen babies as young as 7 months

signing milk. One infant would pat his diaper, indicating it was wet

and time for a change at 9 months!

I wrote a research paper on Language development and cochlear implants

in children. If you'd like to read it, feel free to email me off the

list and I will send it your way!

You sound like a busy mom! Once again, welcome

Freedom, 9/21/05 HOOKED!!

>

> ASL's something we'll continue to work on with her even with a CI...

>

> i'm glad to have found this group & i'm sure i'll have tons of ?'s

along the

> way so please be patient with me!

>

> ~ THE SHEPLERS ~

> ~ Spike & Lori ~

> ~ , Brit, Kiara, Ruby & Karleigh ~

> " What I've said, that will I bring about & what I've planned, THAT

WILL I DO. "

> Isaiah 46:11 â€

>

> + + + + + + + + + + + + + + + + + +

>

> ~ join & read about our family ~

> thesheplercrew

>

December 4, 2005

In a message dated 12/4/2005 6:30:52 P.M. Central Standard Time, romare@... writes:

:

The most important thing is doing your home exercises and physical therapy and taking enough pain medication to allow you to do them. Assuming the surgery went well, you will be in good shape at the end if you keep at your exercises.

Sara

Hi Sara, my Dr. gave me Percocet and it doesn't seem to really help with the pain that much. Also, on Friday when I went to therapy he stretched something on the side of my knee that hurt so bad after. It's just now feeling better and I have to go back tomorrow. Thanks,

December 4, 2005

: The most important thing is doing your home exercises and physical therapy and taking enough pain medication to allow you to do them. Assuming the surgery went well, you will be in good shape at the end if you keep at your exercises. SaraCritrkrazy@... wrote: Hi, I just joined the group and wanted to introduce myself. I just had a TKR on Nov 2 and have to get the other one done soon. I was just wondering what I can expect from here on out. I'm only 45 but they were both so bad that they agreed to do them. They had said I had to wait until I was 50. Thanks,

December 4, 2005

Hi , I had my surgery on my right hip on November 4th. Like you I am also new to this sight. Right now I am experiencing pain from physical therapy. To me that is a good thing. I am also experiencing the length of the leg being off. I was told eventually that will improve. Good luck to you.

Personals Skip the bars and set-ups and start using Personals for free

December 12, 2005

In a message dated 12/12/2005 5:46:31 P.M. Central Standard Time, spitfire1452000@... writes:

Hi ,

I had my surgery on my right hip on November 4th. Like you I am also new to this sight. Right now I am experiencing pain from physical therapy. To me that is a good thing. I am also experiencing the length of the leg being off. I was told eventually that will improve. Good luck to you.

Hi , I think that the pain from the physical therapy is worse than the actual surgery itself. I'm getting my left knee done Feb 2 and it's starting to bother me a lot more, I guess I'm working it more. I've started exercising that knee now also, to hopefully get ready.

December 28, 2005

Welcome Pat,

I would suggest you just learn about nutrition and adjust you diet

accordingly as opposed to spending a lot of money on vitamin/mineral tests

because they are not cheap. Besides, your body's vitamin/mineral levels are

always changing daily, therefore you will never get an accurate reading from

a test you took previously. You should just assume that you are lacking in

most of them, especially since you are on 15 meds. These meds not only

deplete your vitamin/mineral reserves, they are an indicator that you are

deficient because you became sick in the first place and now you " need "

those meds. Statistics show that more than 2/3 of Americans are deficient

in both magnesium and B12, so assume you are as well. Start off with

supplements but strive for a balanced diet that can provide all the

nutrition you need. Download Dr. 's book if you don't already have it

from my website.

http://perfectpcct.com/downloads.htm

A zapper is an electronic device that uses low voltages across two

electrodes to electrocute or " zap " parasites located in the entire

body(except for those located in the eyes, stomach, and intestines. These

places cannot be reached by the electrical current due to the insulative

properties of these organs. Read more about it in the book you download.

You'll need Adobe Acrobat Reader to read it. Let me know if you need that

as well.

Ken

-- I'm New

I'm new to the group and wanted to ask, what kind of Dr. to see what

vitamins and minerals my body needs. And what is a Zapper? I was told to

take magnesium & B6 together because I need the mag. and it doesn't work

without the B6. I really know nothing about any of these but I'm on 15 meds.

a day and there has to be another answer out there for me.

God Bless

Pat

January 12, 2006

In a message dated 1/12/2006 7:59:25 AM Eastern Standard Time,

teesa68@... writes:

He recognises signs

like Home Depot, Walmart, k-mart, jcpenney,mcdonalds, etc...a mile

off...He has a very wobbley gate, falls and trips constantly,

doesn't have a dominant hand. Okay now here's my question for all

the mother's who's children are school aged, does it get better?

Will he be able to eat normally? Go to mainstreem classrooms like

Kindergarten, write, read, etc? Are their things at home that I can

be doing to help along his progress? He is in ot, pt, speech, and

special ed at preschool, but I think that maybe more can be done.

I'm becoming physically and mentally wore out. I know this is a long

posting and I appologise, but I don't know who else to ask all

this...thanks so much, God bless,

4 is a tough age and I do remember it! And yes, it gets better. With the

right therapy and enough time, he will improve in a lot of areas. How much

improvement, nobody can predict! But certainly I remember my oldest ds at 4

and he is a totally different child now at age 17. At 4 he headbanged, didn't

talk and spun things repeatedly! He never slept. He didn't communicate

except to scream. lol. Oh my, the memories. <g> Hang in there .

Roxanna ô¿ô

Don't take life too seriously; No one gets out alive.

January 12, 2006

,

was diagnosed with AS just this past Sept. at age 6, almost 7. He did

the same exact things you are saying about your son. We just thought Jake was

klutsy, we even blamed certain shoes for his tripping. He has yet to decide his

dominant hand. His OT that he saw at Childrens Hosptial said that has to do

with him and the Midline. I'm am actually now just reading on exactly what

midline is and does and effects. Just an example, when the OT was testing him

she had him writing the ABCs on a chalkboard and when he hit mid point he

switched hands instead of just moving over. I still haven't figured out a way

to get past the obsession with lost toys/items. We missed almost a whole

birthday party because we couldn't find a certain match for the socks he wanted

to wear. is in mainstream classes but is given certain accomodations to

be kept there. The school wanted to place him in LS classes but I said no (he

is very smart just needs different ways of presentation). SO he now does 6

instead of 10 spelling words, his test and answers and read to him, number of

questions are reduced, etc. If this doesn't work (was just started after Xmas)

I will try the LS but so far he has just done really well with these extra

things. There are no behavior issues at school so at least we don't fight that

battle. You are on the right track with all the therapy he needs we also have

all you mentioned and I see improvments everyday. Plus as he gets older I see

differences. Just remember you are going to have to fight all the way for

services but the wonderful people in here will help you find resources to the

laws set forth and they are very helpful.

WElcome and good Luck!! It will get better and know you are not alone!

( ) I'm new

Hello, I am totally new at all this, my son is 4 and right now the

official diagnosis is " significantly developementally delayed " They

say it's cause he's too young for an official diagnosis of

aspergers. I got my son when he was 9 months old, he was my foster

son. He was only 12 lbs., undernourished, couldn't hold his head

up, sit up, keep his tongue in his mouth, etc. He projectile

vomited everything he ate, and had never bonded with anyone. I

immediately started the bonding process with him, and he finally

began to eat and keep formula down, gain weight, and smile and sit

up etc. He has made leaps and bounds from when I got him. But now,

he has no attention span, he talks nonstop from am till he falls

asleep, litterally the moment his eyes open he starts talking and

doesn't stop unless he's sleeping. He has only been potty trained

since October of 05, he over stuffs his mouth with food, tongue

thrusts instead of chewing, doesn't understand that there is food on

his fork sometimes and flings it everywhere, only in the last few

months is he able to drink out of a cup without spilling much, he

becomes obsessed with new toys or groups of action figures, when he

lost or broke his scooby doo action figures he replaced them with

mcdonalds " robots " toys, and called them by the scooby name, if he

loses a toy he's obsessed with he will not sleep, or do anything

until, we locate the toy or find a replacement. He recognises signs