newbie

[Guest guest]

Narelle, I'm sorry you have to deal with PA while you have a young family, but

it sounds as if you are very close. Your son may be a much better man because

of his compassion and learning to help at an early age [we have to hope

something positive comes out of all this]. Glad you're on-line with us & taking

meds isn't so bad [if they are helping]...Sylvia in Oklahoma

[Guest guest]

<< " Although I admire his ability to take things in stride, scares me

to death. I don't want to lose the use of my hands. I don't want to

be on pills the rest of my life. Yes I'm in denial but

I'll get over it soon. Just feeling sorry for myself and angry too.

How dare this happen to me. husband says - " Deal " " >>

Hi,

Excuse my summary above, but I think it fits. All of your feelings

are completely normal. It will just take time to work through.

I too, was a control freak as you described. But, I realized that I

should not give up control at all. I just needed to take more

control to allow myself to do all the things I want to do.

I made decisions to agressively treat my health. I tried a few

NSAIDS. No relief. I decided to go directly to MTX. There are lots

of pros & cons. But for me it works. I am able to do everything I

want, I'm pain-free. Longterm, I may need to make other choices, but

this works for now. So, make choices appropriate for you! Take

control, do not let this disease control you. " Deal " on your terms.

Stay Well,

[Guest guest]

Hi Newbie,

From personnel experience, I suggest you not presume that you are

left with a life of pain or lack of control. I suggest you use your

tendency to want to be in control to a positive effect.

I have had PA for 15 years. 10 years ago the PA got worse. Walking

was " uncomfortable " . I could not hold a fork tightly. Things kept

falling from my hands and I had to stop all sports activity. I was

finally diagnosed correctly only when I insisted that this had to be

looked into further and the reasons for a diagnosis be explained to

me. It took months before I was diagnosed correctly and about 10

minutes for the rhumy to convince me she knew what she was talking

about. She was the first doctor who was able to relate my symptoms

to a standard diagnostic protocol. I had been diagnosed with several

other disorders prior to finding someone I believed.

After being diagnosed, I was placed on medication, which I had

difficulty with and was only partially therapeutically helpful. I

keep advocating for myself and the med regiment was changed. This

improved my movement and reduced the pain so that I could be active

again, but the side effects (weight gain) were also effecting me.

When Celebrex came on the scene, it was not covered by my insurance.

I was able to advocate for it and got the insurance to pay for it. I

am doing so well on Celebrex. I have relatively little problems,

almost no pain and few physical limitations. I am skiing and

exercising again and have lost weight.

The moral of the story is you ARE in control and not everyone becomes

incapacitated. Don't give up easily and ask for better treatment.

Knowledge is the power needed to advocate and take control.

Good luck.

Fred

[Guest guest]

In a message dated 4/24/2003 7:00:28 PM Eastern Daylight Time,

web63@... writes:

> MTX alone was not enough for me, but MTX along with

> Enbrel has given me new life.

>

Hi ,

I have a question for you. Did you ever try the Enbrel alone without the

MTX. I have been taking Enbrel and it is starting to give me some relief.

It has started to take the edge off the pain. I am hoping in time that I can

become pain free. If not, I guess I will try MTX also. I was just curious

to know if it is necessary to take two meds. Did you ever stop the MTX while

on the enbrel to see if the enbrel worked alone?

Janet

[Guest guest]

In a message dated 4/24/2003 8:36:05 PM Eastern Standard Time, fam24 writes:

> . Did you ever stop the MTX while

> on the enbrel to see if the enbrel worked alone?

> Janet

Janet,

I think this is and always will be different for everyone! You might need to

take something else, or you might not!

[Guest guest]

Hey Narelle.Welcome to the group I read your e-mail

and understand where you are coming from I remember

when I first out what I had and scared me to death I

was angry and wanted so much for someone to take it

all away cause this could not happen to me I was to

young for thia But as time went on I learned so much

from this group about the diease and as I learned I

could better have mt husbund understand it also.He

said the same thing to me and I was hurt but he

explained it to me like this.Nobody can take it away

and what ever happens is going to and to take each day

and we will survive this together.I guess I to have to

make plans and with this you can not do It is a

everyday event in your life that does need to be dealt

with on a everyday basses.My children are grown and

there are days it was so hard on me that they had to

along with my husbund do things that I can not do that

day but My daughters tell me to look at it this way I

have always been there for them and it makes them feel

good that they can help.I hope you feel better soon

and that this has helped you a little bit

[Guest guest]

,

I had a hard time dealing with not being able to hang with my friends as well.

I got PA when I was 21 (just turned 26). The first couple years we're really

rough. I alienated myself from my friends. They didn't understand why I

couldn't keep up with them. I resented my husband for being healthy and able to

do the things that I wanted to do. I stayed at home angry at the world while

everyone else would go out and do things that a person my age should do. Don't

make the same mistake I did.

I slowly became used to the fact that PA is a part of my life and it always

will be. Sometimes it gets better and sometimes it gets worse. I haven't ever

been totally pain free since then but sometimes I force myself to get up and do

the things I enjoy, even if I hurt more. You can't stop living your life.

Easier said than done (believe me I know).

We were supposed to go to an amusement park for my birthday and ride roller

coasters (something I haven't done in over 5 years). I had to cancel because I

could hardly walk and I knew as much as I wanted to do it that it would only

hurt me. I was really disappointed because this was weeks into planning but my

husband and I decided to go to an Aquarium exhibit instead. We still had fun

not as exciting as roller coasters but at least I got out of the house. You

just have to learn to adapt and make yourself do things. Even if that's just

taking your daughter to a movie or inviting your friends over. Things will get

better.

take care,

P.S. I miss clubbing and dancing too! Last Nov. we visited London and I went

to a club for the first time in ages. We only stayed for a couple of hours and

I spent that time sitting and listening to the music. It was still fun and my

husband sat with me or danced right by the chairs so I wouldn't be stuck alone.

Maybe you could ask your friends to do the same if you can muster up the

strength. We took a taxi so I wouldn't have to walk too far and I conserved my

energy. I was so happy to be back in London that I didn't care how much pain I

was in. You have to get the word " can't " out of your vocabulary otherwise you

will let PA control your life and believe me, you don't want that to happen.

Good luck.

[Guest guest]

Wanda, do you take anything to reduce stomach acid. I, too, am allergic to

sulfa & have tried Mobic. I use Vioox, but I take a prescription one a day

thing for stomach acid. I've gotten ulcers from medication in the past & it

doesn't take a lot to get the area stirred up again. Vioox may raise blood

pressure for some.

[Guest guest]

In a message dated 4/27/2003 11:37:45 AM Eastern Standard Time,

magraw2@... writes:

> The generic name for it is Meloxicam.

I tried Mobic, and it did nothing for me. I guess my body just loves Sulfa.

[Guest guest]

Can oyu take Celebrex? I have had good theraputic results with it?

-

[Guest guest]

Can oyu take Celebrex? I have had good theraputic results with it?

> Hello to all. I've been reading for a while and find this group

very

> useful. I am on a medication that I have not seen mentioned yet. I

> am wondering if anyone has used this med. It is a NSAID called

> Mobic. The generic name for it is Meloxicam.

>

> I cannot use those containing sulfa, such as Bextra, etc. because I

> am allergic to sulfa. Mobic is rather rough on the stomach

> unfortunately. I am supposed to take it daily but so far I am only

> taking it when I feel severe pain. I can only imagine what some of

> you are going through as I am sure you have much bigger problems

than

> I currently do. I was just diagnosed with PA in December.

>

> I too, am on thyroid replacement, having had Graves' disease

(another

> auto-immune disorder) and RAI treatment.

>

> Wanda

[Guest guest]

Vioxx does not contain sulfa? I took a medication for

the stomach thing and it made my mouth so dry that I

stopped taking it. I can't remember the name of it

though.

[Ed. Note: Vioxx is not a sulfa (containing) drug.

D.]

--- Jens Sylvia Olesen <salo99@...> wrote:

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

Wanda, do you take anything to reduce stomach acid.

I, too, am allergic to sulfa & have tried Mobic. I

use Vioox, but I take a prescription one a day thing

for stomach acid. I've gotten ulcers from medication

in the past & it doesn't take a lot to get the area

stirred up again. Vioox may raise blood pressure for

some.

[Guest guest]

Hi Fred. I thought Celebrex was one of the newer

drugs that contained sulfa. I guess I have a lot to

learn about all the different medications that are

available. wanda

--- Fred <fred.hurwitz@...> wrote:

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

Can oyu take Celebrex? I have had good theraputic

results with it?

-

[Guest guest]

Hi Carole,

Welcome !!

I'm not 'up' on amounts for little ones but am sure others on here will be

able to help you.

It might be easier for people to say what would be good for you to use if

you could tell us what you are giving them to help with.

Have you looked at any sites ?

danasview , enzymestuff etc.

best of luck

Julea : o)

www.emagforall.netfirms.com

---

Outgoing mail is certified Virus Free by AVG so it wasn't me !

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.518 / Virus Database: 316 - Release Date: 11/09/2003

[Guest guest]

>>>>I have read up on enzymes and am very interested in the

peptyzide and non fenol product, should I use probiotics for a while

first and introduce enzymes or vice versa.

Probiotics and enzymes work very well together. But do just start

one at a time so you can make sure each supplement (and brand) is

well tolerated. Since you have the probiotics, go ahead and start

those for at least a week, then start the enzymes one at a time

afterwards. Between the Peptizyde and No-Fenol I am not sure which

would be better, but tend to favor the Peptizyde. If your child is

highly sensitive to phenolic foods, perhaps the No-Fenol would be

better. They do different things so just pick one. Note that

probiotics and both enzyme products can cause die-off if yeast

and/or bacteria is an issue, so be prepared for a little more

adjustment with each addition.

You might want to contact the Bio-kult manufacturer and see if that

product needs to be given away from enzymes (particularly proteases)

or if it is okay to give at the same time. Probiotic brands differ

on this.

.

[Guest guest]

> Hi

>

> I am from UK, my son is 3.5yrs old, is it wise to start probiotics

> and enzymes together,

Start one thing at a time, so you know what works and what does not,

and what causes problems.

I have just purchased biokult and will be

> starting it tomorrow, I have read up on enzymes and am very

> interested in the peptyzide and non fenol product, should I use

> probiotics for a while first and introduce enzymes or vice versa.

Either way is fine, just wait at least a week before starting the next

thing.

> Any ideas on the 2 products together will be appreciated.

Some enzymes you should give at a different time as probiotics because

they will digest the probiotic so the probiotic will be a waste.

Dana

[Guest guest]

Welcome ! I've got two kids, a dd who's 20 (NT) and living in St

sburg Russia this year, and a 15 year old ds, who's got AS and is a

sophomore in high school. You'll find lots of people on this list who've been

through nearly everything and then some. Some people have been diagnosed by

developmental pediatricians, others by psychiatrists. There are a bunch of

different routes to take.

Liz in Sunny San Diego

mitchellboys3 wrote:

> Hello! I just joined this list and thought I would post a quick intro.

>

> My name is and I am a mom of 4 young children. My oldest is 7 -

youngest is almost 2. The oldest 3 are boys. Needless to say, we have a very

busy house! lol

>

> My second son (almost 6) has been dx'd with SID and I suspect he also has

Asperger's. He exhibits all of the parameters for diagnosing. Sooo... I toyd

with the thought of getting him a dx - but I am not really sure what getting a

dx would actually do. We had a horrible experience with our last developmental

pediatrician.

>

> So, I am on a mission to find things that will help us - and our entire

family.

>

> Some things that we are looking for guidance with include ideas for helping

him learn that there are gray areas. He is VERY black and white. For instance

- last week i told him he could have a small glass of Pepsi, so this week he

thought he could have some too because he had it before. He also has been

completely loosing control when my dh goes to tae kwon do two evenings a week...

he went with dh once, and now Nate andour oldest are taking turns going... but

on 's saty home nights, he completely looses control - last week that

included peeing on his sister's stuffed dog. (he literally got it out of his

system)

>

> He also does not 'get' other people's feelings. I could be bawling my eyes

out, and he would have no reaction of empathy - even when my other chidlren are

showing empathy. He doesn't seem to understand that there is a world around

him... a very self-centered attitude, which some is typical for this age - but

NOT to the extent he shows.

>

> I really look forward to reading what others are doing that help. Thanks a

TON!

>

>

>

>

[Guest guest]

Welcome! 4 kids...wowza. My two boys keep me on my toes!

Sooo... I toyd with the thought of getting him a dx - but I am not

really sure what getting a dx would actually do. We had a horrible

experience with our last developmental pediatrician.

It will often open doors that should already be open. JMO. And for me

it brought a sense of relief. It brought validation too.

He is VERY black and white. For instance - last week i told him he

could have a small glass of Pepsi, so this week he thought he could

have some too because he had it before.

I would try to be as specific as possibly. For ex You may have Pepsi

TODAY because.... Maybe even remind him that once does not mean

twice. That ALWAYS want to know WHY! I usually save my sarcasm for

my dh. I was saying to our advocate that my son's new teacher is

delusional. She THINKS my HFA son gets her jokes that nooone else

does. Not true. He LOVES attention and praise. So he is actually

trying to read her to get a reaction. I figure this is a good thing.

He needs much work when it comes to reading social cues. However

should I warn her? I can just picture her saying Hunter if you have

so much to say why don't you run the class. And Hunter would!!! lol!

He also has been completely loosing control when my dh goes to tae

kwon do two evenings a week... he went with dh once, and now Nate

andour oldest are taking turns going... but on 's saty home

nights, he completely looses control - last week that included peeing

on his sister's stuffed dog. (he literally got it out of his system)

Hmm...would it help if you made a calendar so he could see it in

writing? Also is there a fun thing you can do at home w/ your sons on

their off days...maybe bake cookies?

> He also does not 'get' other people's feelings. I could be bawling

my eyes out, and he would have no reaction of empathy - even when my

other chidlren are showing empathy. He doesn't seem to understand

that there is a world around him... a very self-centered attitude,

which some is typical for this age - but NOT to the extent he shows.

YUP! For us it has very slowly gotten better. Is he in a social

skills class? Anything that talks about how you can tell how others

are feeling. How do you yourself express feelings. And are they

appropriate...why or why not. Picts help my son. He has a chart that

shows the steps to use if in conflict w/ a peer. It has helped ALOT.

He's smart. He KNOWS what he is supose to do, but he would forget in

the heat of the moment time and time again. Amazingly enough the

teacher now catches it early, points him to his desk, and it helps.

WOW!

So I guess my suggestions are to talk talk talk to your son. Let him

show his feelings. Talk about them. Tell him you understand(even when

you don't), but show him better ways along w/ the why. Set up mock

situations w/ the siblings and have him practice reading what his

brother is thinking. Etc Read books w/ lil golden morals or social

stories. Buy software that helps identify faces and their

expressions. W/ my 3 yro I often over exaggerate my expressions in an

effort to get him to understand. I'm hoping w/ age I can continue to

lessen that.

The self-centeredness takes longer though. Just encourage sharing,

doing nice for others, etc.

a

[Guest guest]

Good luck. They have the pegylated version now, not sure if that's what you went through. I did the 3x wkly injections. The peg is a little better, being only once a week, but it seems that it has the same sides. Keep us posted with any further developments. -dz-rcj112 <rcj112@...> wrote:

Hi Guys,I'm from WV. Was dx in 98. To the best of my knowledge have had it since the early 70s. (I'm 51) I went thru tx in 01 thru 02 with good results, BUT it's back. I've only been for a couple test to see the degree, but am going for the full tilt PCRs in a few weeks. At this point I've straighten my life out to the point where I think I can survive with it if I have to. I eat farely healthy. Get exercise. Stopped smoking & drinking. (I miss my vices I'm not too keen on going thru tx again unless they can come up with a better plan. 16 months post tx & I still have side affects. They're not debilitating, but I don't want to add to them by going thru tx again unless I'm sure of the outcome. Thanks for reading. Take care.rc

[Guest guest]

Hi, Judy ! and I will take this opportunity to say hi to all newbies - Welcome

!!

( ) Newbie

Hi!

My name is Judy Roberson-Steele I am a stay at home mom of two Aspies:

Daughter is ten dxed age four; son will be nine in two weeks, he was

diagnosed last fall (after four years of wrestling with the school

system and having his pediatrician and an independent OT get

involved!) and is now getting some support in the classroom.

I'm not much for posting (I will, I just may not be very consistent

about it

This looks like a very good, friendly, supportive place. Thanks for

listening and hope to get to know you all better!

Judy

(who goes for first ARD/IEP with son next week 8)

[Guest guest]

Hi, Judy. I think you will be in good company and plenty of it if you mostly

just lurk rather than post ... welcome to the list!

/ 4makelas@...

Way, Way Up in Northern Ontario

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

From: " ladykatttx " <ladykatttx@...>

> My name is Judy Roberson-Steele I am a stay at home mom of two Aspies:

> Daughter is ten dxed age four; son will be nine in two weeks, he was

> diagnosed last fall (after four years of wrestling with the school

> system and having his pediatrician and an independent OT get

> involved!) and is now getting some support in the classroom.

>

> I'm not much for posting (I will, I just may not be very consistent

> about it

>

> This looks like a very good, friendly, supportive place. Thanks for

> listening and hope to get to know you all better!

>

[Guest guest]

Welcome. We'd love to hear from you as often as you want or need.

However you are not alone. Most of our members are mostly silent.

Only a few of us post regularly. I guess we are more needy. I get

so much from this board. I hope it brings you the same peaceful

feelings.

a

> Hi!

>

> My name is Judy Roberson-Steele I am a stay at home mom of two

Aspies:

> Daughter is ten dxed age four; son will be nine in two weeks, he was

> diagnosed last fall (after four years of wrestling with the school

> system and having his pediatrician and an independent OT get

> involved!) and is now getting some support in the classroom.

>

> I'm not much for posting (I will, I just may not be very consistent

> about it

>

> This looks like a very good, friendly, supportive place. Thanks for

> listening and hope to get to know you all better!

>

> Judy

> (who goes for first ARD/IEP with son next week 8)

[Guest guest]

Hi Judy! Welcome to you and you can feel free to post or not as

often (or as little!) as you like. We are not picky here!

Roxanna

> Hi!

>

> My name is Judy Roberson-Steele I am a stay at home mom of two

Aspies:

> Daughter is ten dxed age four; son will be nine in two weeks, he was

> diagnosed last fall (after four years of wrestling with the school

> system and having his pediatrician and an independent OT get

> involved!) and is now getting some support in the classroom.

>

> I'm not much for posting (I will, I just may not be very consistent

> about it

>

> This looks like a very good, friendly, supportive place. Thanks for

> listening and hope to get to know you all better!

>

> Judy

> (who goes for first ARD/IEP with son next week 8)

[Guest guest]

Good that they're starting to open up their eyes finally. -dz-D W <bimm50@...> wrote:

I work in a hospital and though I have had no ill effects from the bug I like to keep my eyes open. Saw an article in a medical paper where doctors, nurses, clergy and other up standing citizens all volunteered for a test. Even though they did not fit the so call profile 12% of them had Hep-c and didn't know it. Really shocked the community as the CDC has been saying 4%. Will probably draw lots more money and attention into the R & D on hep-c prevention and treatment.Dale_________________________________________________________________Enjoy MSN 8 patented spam control and more with MSN 8 Dial-up Internet Service. Try it FREE for one month! http://join.msn.com/?page=dept/dialup

[Guest guest]

My dr told me much the same. I was worried about the stigma of the "low-life drug addict". Even though I've been clean and sober for 8 years and a working man all my life. I understand many people with the disease never were drug users. My doctor told me that I would be surprised to know the people he was treating for hcv. They were by and large respectable citizens in no particular social group. It did help me deal with the feeling that I was somehow "dirty" because of having this disease. -dz-DIANE <jerzegirlinfl@...> wrote:

Hi Dale and thank you for the info:.... As time goes by it is being discovered that Hep C has no real profile as once thought. People in all walks of life have been diagnosed with Hep c. Kind of makes me wonder what we will learn in the future regarding this. The one thing we all must do is stick together and learn as much as we can.... We will kick the Dragons Butt together!!!!

Diane