a question

[Guest guest]

, you do have some tough questions. Does your husband have insurance?

I know even with the insurance the co pay is pretty high, esp. on the Orencia &

remicade. You might check into the co pay assistance that some drug companies

have. It's possible you'd qualify for help. Personally, I couldn't live

without the prednisone. That's the only thing that has kept me moving so far.

Good luck! You're in my prayers.

[Guest guest]

I would use the meds but first I would look up and talk to a pharmacist about

all there side effects. Also what are there interactions with other drugs and

with in them self¢s.

As others have said the meds are for pain and joint destruction. I for one took

meds blindly from my docs yes docs and in the end had some very bad effects from

them as they were not compatible. Some of what I was on is no longer even

offers. I can say I believe they help back the joint trouble and also did help

with the pain. Now days I take almost nothing and well I live in pain and have

some joint problems in my feet .I believe they are from not going after the

stills with them for the last 5 years.

I trust my docs but only to a point. I will never take blindly but read up on

each on and how they are with other drugs both prescriptions and over the

counter

On the rash mine has never been dark nor painful just there and most of the

time itchy. I get it on the palms of my hands, across my face (cheeks and nose)

and also my upper back from shoulder to shoulder. Normally just a light pink

color almost like I am blushing

Hope some of this helps

Hugs

The redneck

Marty

________________________________________________________________________________\

____

Looking for a deal? Find great prices on flights and hotels with Yahoo!

FareChase.

http://farechase.yahoo.com/

[Guest guest]

I would use the meds but first I would look up and talk to a pharmacist about

all there side effects. Also what are there interactions with other drugs and

with in them self¢s.

As others have said the meds are for pain and joint destruction. I for one took

meds blindly from my docs yes docs and in the end had some very bad effects from

them as they were not compatible. Some of what I was on is no longer even

offers. I can say I believe they help back the joint trouble and also did help

with the pain. Now days I take almost nothing and well I live in pain and have

some joint problems in my feet .I believe they are from not going after the

stills with them for the last 5 years.

I trust my docs but only to a point. I will never take blindly but read up on

each on and how they are with other drugs both prescriptions and over the

counter

On the rash mine has never been dark nor painful just there and most of the

time itchy. I get it on the palms of my hands, across my face (cheeks and nose)

and also my upper back from shoulder to shoulder. Normally just a light pink

color almost like I am blushing

Hope some of this helps

Hugs

The redneck

Marty

________________________________________________________________________________\

____

Looking for a deal? Find great prices on flights and hotels with Yahoo!

FareChase.

http://farechase.yahoo.com/

[Guest guest]

I would use the meds but first I would look up and talk to a pharmacist about

all there side effects. Also what are there interactions with other drugs and

with in them self¢s.

As others have said the meds are for pain and joint destruction. I for one took

meds blindly from my docs yes docs and in the end had some very bad effects from

them as they were not compatible. Some of what I was on is no longer even

offers. I can say I believe they help back the joint trouble and also did help

with the pain. Now days I take almost nothing and well I live in pain and have

some joint problems in my feet .I believe they are from not going after the

stills with them for the last 5 years.

I trust my docs but only to a point. I will never take blindly but read up on

each on and how they are with other drugs both prescriptions and over the

counter

On the rash mine has never been dark nor painful just there and most of the

time itchy. I get it on the palms of my hands, across my face (cheeks and nose)

and also my upper back from shoulder to shoulder. Normally just a light pink

color almost like I am blushing

Hope some of this helps

Hugs

The redneck

Marty

________________________________________________________________________________\

____

Looking for a deal? Find great prices on flights and hotels with Yahoo!

FareChase.

http://farechase.yahoo.com/

[Guest guest]

Keep in mind that Prednisone (usually doses greater than 10mg/day) will

also give a " rash " , usually across the face and sometimes known

as " roid cheeks " . This happens to others I know on Pred without

Still's. My cheeks turn bright red from the prednisone, usually in the

evening since take my dose in the AM. Must be related to the levels

declining at that time of day. Not bad at 20mg but increase in

brightness and chubbiness when I have gotten bumped to 60-80 mg and

worse after my 1000mg Pulse treatments.

Tom from PA

>

[Guest guest]

Keep in mind that Prednisone (usually doses greater than 10mg/day) will

also give a " rash " , usually across the face and sometimes known

as " roid cheeks " . This happens to others I know on Pred without

Still's. My cheeks turn bright red from the prednisone, usually in the

evening since take my dose in the AM. Must be related to the levels

declining at that time of day. Not bad at 20mg but increase in

brightness and chubbiness when I have gotten bumped to 60-80 mg and

worse after my 1000mg Pulse treatments.

Tom from PA

>

[Guest guest]

Keep in mind that Prednisone (usually doses greater than 10mg/day) will

also give a " rash " , usually across the face and sometimes known

as " roid cheeks " . This happens to others I know on Pred without

Still's. My cheeks turn bright red from the prednisone, usually in the

evening since take my dose in the AM. Must be related to the levels

declining at that time of day. Not bad at 20mg but increase in

brightness and chubbiness when I have gotten bumped to 60-80 mg and

worse after my 1000mg Pulse treatments.

Tom from PA

>

[Guest guest]

My dear Tom:

I'm glad you don't have my type of rash too. Now when I have a flare,

either minor or major, even my dog's tongue hurts and I get a shadow

of the rash. I know it's there but my husban doesn't see it unless

the light hits it just right.

Of late I've had to live on vicodin because of the quick storms we get

in the late afternoon/early evening. The pain is tremendous but the

fevers haven't come back as strong as they once did. I also get

blurred vision from time to time. I have reading glasses that I wear

when I'm doing my cross stitch and reading (of course) but will most

likely be wearing them more often until this blurriness resolves.

Take care and be well.

Ellen

[Guest guest]

My dear Tom:

I'm glad you don't have my type of rash too. Now when I have a flare,

either minor or major, even my dog's tongue hurts and I get a shadow

of the rash. I know it's there but my husban doesn't see it unless

the light hits it just right.

Of late I've had to live on vicodin because of the quick storms we get

in the late afternoon/early evening. The pain is tremendous but the

fevers haven't come back as strong as they once did. I also get

blurred vision from time to time. I have reading glasses that I wear

when I'm doing my cross stitch and reading (of course) but will most

likely be wearing them more often until this blurriness resolves.

Take care and be well.

Ellen

[Guest guest]

My dear Tom:

I'm glad you don't have my type of rash too. Now when I have a flare,

either minor or major, even my dog's tongue hurts and I get a shadow

of the rash. I know it's there but my husban doesn't see it unless

the light hits it just right.

Of late I've had to live on vicodin because of the quick storms we get

in the late afternoon/early evening. The pain is tremendous but the

fevers haven't come back as strong as they once did. I also get

blurred vision from time to time. I have reading glasses that I wear

when I'm doing my cross stitch and reading (of course) but will most

likely be wearing them more often until this blurriness resolves.

Take care and be well.

Ellen

[Guest guest]

,

Meds have saved me - and many others here. Only you can make a choice

with you doctor about what you want to do, but our immune systems are

not right and we need help to get them under control.

All human bodies are not the same and when there is illness we

sometimes need medications to help the body become more " normal " . Are

there potential consequences to taking these medicines - sure. Just

as there are consequences for not taking meds and not getting illness

under control. I suppose you have to weigh the two and see which

outcome you are more comfortable living with.

Having a doctor that you can talk to about all of this is very

important and I hope you have that.

Houston, Texas

[Guest guest]

,

Meds have saved me - and many others here. Only you can make a choice

with you doctor about what you want to do, but our immune systems are

not right and we need help to get them under control.

All human bodies are not the same and when there is illness we

sometimes need medications to help the body become more " normal " . Are

there potential consequences to taking these medicines - sure. Just

as there are consequences for not taking meds and not getting illness

under control. I suppose you have to weigh the two and see which

outcome you are more comfortable living with.

Having a doctor that you can talk to about all of this is very

important and I hope you have that.

Houston, Texas

[Guest guest]

,

Meds have saved me - and many others here. Only you can make a choice

with you doctor about what you want to do, but our immune systems are

not right and we need help to get them under control.

All human bodies are not the same and when there is illness we

sometimes need medications to help the body become more " normal " . Are

there potential consequences to taking these medicines - sure. Just

as there are consequences for not taking meds and not getting illness

under control. I suppose you have to weigh the two and see which

outcome you are more comfortable living with.

Having a doctor that you can talk to about all of this is very

important and I hope you have that.

Houston, Texas

[Guest guest]

As you can see fromt he " WrongPlanet has done it again " post, the

online AS community has in at least two instances been a place where

killers and alleged killers listed out what they planned to do

unfettered and then carried out their plans.

Conversely, I'd like to think that we help people here.

Tom

Administrator

Hi,

I'm currently working on an article about how technology has effected

the development of the autistic community. It's being prepared for a

book chapter on rhetoric and technology in a larger anthology on the

topic for a university press. Would anyone here feel up to commenting

briefly on how some of the technologies used in the community ( i.e:

listservs like this one, forums, blogs, IRC, etc.), have effected them

personally or the community? I'm particularly interested in seeing how

the development of new technologies has facilitated our cultural

development in ways that would not necessarily have been possible

offline. Any comments would be appreciated.

Thanks,

Ari

[Guest guest]

For me, the internet and forums and instant messaging started helping

me long before I even knew about Asperger's or was convinced (nearly)

that it applied to me.

Writing is my most natural form of communication. Talking, especially

about things that are important to me, is not just difficult, but

nearly impossible when someone opposes me in a forceful way. Before I

had an opportunity to post on forums, the primary way I would think

through my thoughts was in my head, never really sharing them with

anyone, and therefore feeling isolated.

There were a few times in my life before the net where friends took

the time to talk with me and hear me out, and many times they

expressed amazement that there was 'all of that' going on inside my

head. But most of my interactions seemed to be surface and I was

treated as 'not very smart'.

Once I started to get onto internet forums it was like the playing

field was completely leveled. No body saw me as a woman, or saw my

age, or was influenced by my staggered speaking or judged me for my

lack of eye contact and shut down affect. Instead, they saw only what

I wanted them to see - my words.

I still made mistakes and said things that were 'off' but the response

was immediate and many times harsher than I had ever experienced. In

real life people more often than not ignore you and go away if you are

inappropriately blunt, and except for the few times when I was

chastised for saying things I shouldn't, I didn't really know what I

was doing wrong. On the net, people tell you.

Which brings me to the biggest learning experience I've had on the net

- just because someone is mean, it doesn't mean you did something

wrong. I grew up paranoid about my behavior because much of my

bewilderment and lack of understanding of what to do in certain

situations was judged as 'immoral' - not being friendly enough, not

being patient enough, not figuring out on my own what was expected of

me meant I didn't do it on purpose just to hurt others. But on the

net I was accused of things that I know I didn't do by people who

weren't my family or friends or bosses and the distance between myself

and them through the screen allowed me to have perspective.

Instant messaging was also a new experience for me - it is so much

easier to connect to someone who can't interrupt me, and when I have

time to 'catch up' to what they were thinking and saying if it doesn't

register at first. Learning the social rules for instant messaging

wasn't intuitive, but once I learned that just because someone doesn't

respond to your message it doesn't mean they are purposefully ignoring

you, I was able to translate that to my real life experiences.

Disputes on forums with unfair/bias administrators has also been a

huge learning experience. I have worked out a lot of my authority

issues on line - figuring out how to talk to people who don't make

sense to me in a respectful way - learning when it's just not worth it

to let unfairness bother me. Because it was all done on line, at my

leisure (meaning they aren't in my face, but I choose when to sit down

and interact) I have been able to process what they say on my time and

have become much better at not letting my first emotional reaction

dictate to me how I respond.

Which brings me to the 'edit' function. Being able to read what I say

before I say it, rewrite paragraphs to say it in the best way has

enabled me to in real life more quickly come up with what I want to say.

Basically, the internet has been like a social training ground for me

and I can't count the number of times that something happens to me in

real life that I have experienced on the net - and I knew what to do!

Where as before I had no clue and making a mistake in real life is

always so much more damning.

I've not even touched on how many friends I've met who are just like

me, where as in my real life finding people as atypical as me is

nearly impossible - especially when that atypicalness has to do with

social interactions, but also when those interests are odd. (like

serious costuming)

That's a bit of a ramble and I haven't even included everything...

feel free to ask me more about anything I've put here.

And I would like to read your article when you're done.

[Guest guest]

Okay, I'm responding to this late, but that is how far I am behind

with the posts :-( Offline stuff is really causing me a fair bit of

hassle at moment (and has been for quite some time).

Anyways, I have always disliked communicating face to face and

writing is my preferred mode of communication, so the internet and

some forums have really helped me a lot. However, not all forums are

equal, I tend to shy away from forums/lists where people 'flame', or

are just downright nasty.

I have occasionally met people in RL that I first met online - one

very bad experience, but another time I made a friend - they just

happened to amazingly life a few streets away from me.

Also when I first suspected I might be on the autism spectrum it was

a relief to find others that were and not have to meet up in RL with

all the sensory overload stuff.

>

> Hi,

>

> I'm currently working on an article about how technology has

effected the

> development of the autistic community. It's being prepared for a

book

> chapter on rhetoric and technology in a larger anthology on the

topic for a

> university press. Would anyone here feel up to commenting briefly

on how

> some of the technologies used in the community ( i.e: listservs

like this

> one, forums, blogs, IRC, etc.), have effected them personally or the

> community? I'm particularly interested in seeing how the

development of new

> technologies has facilitated our cultural development in ways that

would not

> necessarily have been possible offline. Any comments would be

appreciated.

>

> Thanks,

> Ari

>

[Guest guest]

Mmmmm I curious, have you ever been in non aspie chat rooms and what

do you think of them?

The above question to anyone here, btw.

I have tried them previously I was hoping they would help my social

skills, but much like RL, I quickly realised I not really like

socializing that much.

>

> For me, the internet and forums and instant messaging started

helping

> me long before I even knew about Asperger's or was convinced

(nearly)

> that it applied to me.

>

> Writing is my most natural form of communication. Talking,

especially

> about things that are important to me, is not just difficult, but

> nearly impossible when someone opposes me in a forceful way. Before

I

> had an opportunity to post on forums, the primary way I would think

> through my thoughts was in my head, never really sharing them with

> anyone, and therefore feeling isolated.

>

> There were a few times in my life before the net where friends took

> the time to talk with me and hear me out, and many times they

> expressed amazement that there was 'all of that' going on inside my

> head. But most of my interactions seemed to be surface and I was

> treated as 'not very smart'.

>

> Once I started to get onto internet forums it was like the playing

> field was completely leveled. No body saw me as a woman, or saw my

> age, or was influenced by my staggered speaking or judged me for my

> lack of eye contact and shut down affect. Instead, they saw only

what

> I wanted them to see - my words.

>

> I still made mistakes and said things that were 'off' but the

response

> was immediate and many times harsher than I had ever experienced.

In

> real life people more often than not ignore you and go away if you

are

> inappropriately blunt, and except for the few times when I was

> chastised for saying things I shouldn't, I didn't really know what I

> was doing wrong. On the net, people tell you.

>

> Which brings me to the biggest learning experience I've had on the

net

> - just because someone is mean, it doesn't mean you did something

> wrong. I grew up paranoid about my behavior because much of my

> bewilderment and lack of understanding of what to do in certain

> situations was judged as 'immoral' - not being friendly enough, not

> being patient enough, not figuring out on my own what was expected

of

> me meant I didn't do it on purpose just to hurt others. But on the

> net I was accused of things that I know I didn't do by people who

> weren't my family or friends or bosses and the distance between

myself

> and them through the screen allowed me to have perspective.

>

> Instant messaging was also a new experience for me - it is so much

> easier to connect to someone who can't interrupt me, and when I have

> time to 'catch up' to what they were thinking and saying if it

doesn't

> register at first. Learning the social rules for instant messaging

> wasn't intuitive, but once I learned that just because someone

doesn't

> respond to your message it doesn't mean they are purposefully

ignoring

> you, I was able to translate that to my real life experiences.

>

> Disputes on forums with unfair/bias administrators has also been a

> huge learning experience. I have worked out a lot of my authority

> issues on line - figuring out how to talk to people who don't make

> sense to me in a respectful way - learning when it's just not worth

it

> to let unfairness bother me. Because it was all done on line, at my

> leisure (meaning they aren't in my face, but I choose when to sit

down

> and interact) I have been able to process what they say on my time

and

> have become much better at not letting my first emotional reaction

> dictate to me how I respond.

>

> Which brings me to the 'edit' function. Being able to read what I

say

> before I say it, rewrite paragraphs to say it in the best way has

> enabled me to in real life more quickly come up with what I want to

say.

>

> Basically, the internet has been like a social training ground for

me

> and I can't count the number of times that something happens to me

in

> real life that I have experienced on the net - and I knew what to

do!

> Where as before I had no clue and making a mistake in real life is

> always so much more damning.

>

> I've not even touched on how many friends I've met who are just like

> me, where as in my real life finding people as atypical as me is

> nearly impossible - especially when that atypicalness has to do with

> social interactions, but also when those interests are odd. (like

> serious costuming)

>

> That's a bit of a ramble and I haven't even included everything...

> feel free to ask me more about anything I've put here.

>

> And I would like to read your article when you're done.

>

[Guest guest]

>

> Mmmmm I curious, have you ever been in non aspie chat rooms and what

> do you think of them?

>

> The above question to anyone here, btw.

>

> I have tried them previously I was hoping they would help my social

> skills, but much like RL, I quickly realised I not really like

> socializing that much.

>

>

>

I didn't see this question...

I have been in non-aspie chats and on non-aspie boards as well and

they are much less enjoyable and I can't keep up with the chatter...

However, because my interests are sci-fi/fantasy hobby specific, on

the boards I have mostly gone to there are a lot of 'geeks' who are

spectrum types or cousins so most of the discussions are topic based

and if there are fights they are over really important stuff like

religion/politics, or who recast someone's helmet...

The forums where people are just having fun are uncomfortable for me

and while I consider myself to have a good sense of humor, I just

can't participate in on going threads of silliness. Though from a

purely theoretical perspective I understand it is a game to establish

friendliness and affection. Much like flirting, while I understand

it's how others begin and enter into relationships, I can't do it

unless the relationship is already safe and close.

[Guest guest]

I've found them very rude and obnoxious with chat cliques forming

and fragmenting almost every 15 minutes. They are too chaotic for me

to deal with.

Tom

Administrator

Mmmmm I curious, have you ever been in non aspie chat rooms and what

do you think of them?

The above question to anyone here, btw.

I have tried them previously I was hoping they would help my social

skills, but much like RL, I quickly realised I not really like

socializing that much.

[Guest guest]

A couple of weeks ago I made a boatload of meringues, both as cookie snacks and

some large pavlova rings. I had a lot of egg yolks leftover so I put them in a

ziplock bag and froze them. Today I'm ready to use them. Several directions to

go, a lemon or orange cream, or a zabaglione. So of course I decided on a Lemon

Curd. <g> We love curds spread on croissant for breakfast. Normally I made it in

a double boiler boiler but I was wondering if it would be do-able in a Vitamix.

Anyone try it? ? Lea Ann? Any of you long time VM folks?

Thanks,

terry