New Member

[Guest guest]

Dear Barbara Haynes,

I would tell your daughter that it is nothing to do with what she or her

husband did, they do not know what causes CHARGE I have been told this by 10

differant Doctors and if they don't know what causes it her nieghbor defantly

doesn't. Our son is 2 and will be 3 on October 11 and he has had 11 surgeries

and has been in & out of the hospital so much we have lost count how many times

tell her that it will get better soon. We will pray for her and her family.

Just give her support and she will get her mind cleared. One of my husband's

sister's take our son once a week during the day to give me a break and I have

found that it helps alot. Give her a big hug and let her know that she is not a

lone in what she is going though.

Your Friend,

Kerry &

Parents to CHaRGEr

[Guest guest]

,

Welcome to the list. obviously has a wonder aunt who in turn has a

wonderful friend!

Ask specific questions and those out there who have answers will respond.

Have you checked out the webpages? Casey's is the best starting place.

(right Casey? LOL)

http://www.geocities.com/Heartland/1220/

Janet

Wife to Matt

Mom to & (CHaRGEr) 7, nne 2, and

Mom to 15 months.

Weymouth, Massachusetts, USA

[Guest guest]

,

I have a question, what is rectal prolapse? I don't believe I've heard that

here before. Does see a physical therapist or occupational

therapist? The PT and OT my daughter see are very helpful in finding her

the equipment she needs to get the ball rolling with those types of issues.

Mom to Kennedy 19 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>From: Hawkswill@...

>

>I set-up a membership in your organization for my friend,last night.

>She is the aunt of , a charge child. She has been searching for an

>organization like this for the last two years. She does not have a

computer,

>and was not able to find anything on the computer at the library. She was

>most excited to see this site. has holo profenchephaly, (sp?),

>aorta septic defect, double outlet right ventricle, rectal prolapse, radial

club arms, tiny genitals, and eye and ear problems.

>

>What is the best way for me to find out about help in these areas? I am

particularly interested in finding help for the rectal prolapse, (he

despises what has to be done to him now), and developing a chest type roller

attachment so that he can crawl.

>

>Oh, he also has a cleft palate, poor muscle tone, and the motor development

of a 6 month old.

>

>I am probably not explaining this very well, but this visit was the first

time I have seen for quite some time. We were told he would not

live more than a few months. I am amazed at the progress he has made since

then. Doctors don't seem to be much help when it comes to finding ways to

allow him to do more things. Perhaps some of you will.

>

>Thanks for your time,

>

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

[Guest guest]

Greetings, . Welcome to the group. This group is getting quieter and

quieter of late, though, but there's a bunch of other sites around if you can

find them. There's a couple of chatrooms on several IRC channels around the

place; ask and you shall receive a ton of information about them. Most members

of this group frequent several sites.

I'm not so sure that there's less tolerance these days than before, it depends

on the culture. Where I lived and went to school, there was a great deal of

tolerance; though, I am told the school is changing for the worse.

It sounds like you've had it rough. Must be horrible to be accused of child

abuse. My mother, too, was accused of physical child abuse. Having 7 children,

we had a lot of accidents and frequent trips to the hospital.

That is a different reaction. Most of the AS I've talked to have expressed

relief and been happy to receive the diagnosis. It depends on how you look at

it. On one hand, its an affirmation that there's nothing defective with you,

there's a bunch of people just like you. Don't pay any attention to the

terminology, its basically just a label that can entitle you to help and

accomodations. Such accomodations can be extremely helpful during school. Don't

look at it as something wrong, just different.

If its making her depressed, perhaps its not the best thing for her. How was she

doing before the special program? Unfortunately, during school, there's a stigma

associated with being on a special program. That could be part of the problem.

What exactly is the program? I have found that drugs are no substitute for

self-affirmation in getting rid of depression caused by being, essentially, an

outcast. They can help though, but they aren't a cure. I have no idea how to

help this come about, its a self-realization one must come to.

Instead of having her leave school, why not just take her off the program?

Surely it would be better than removing her from school entirely.

Anyways, yeah, there are probably a bunch of people that have experienced a

little of what you're going through. Welcome to the fold!

Danlo

Send instant messages to your online friends http://au.messenger.yahoo.com

[Guest guest]

Welcome, . Danlo is right that this group has been quiet

lately. Its more active sibling can be found here:

http://groups.yahoo.com/group/AutAdvo/

Most people find it easier to read messages that are broken up into

paragraphs. A solid block of type is harder that several shorter

blocks.

One of the " snips " on my " Snippets " page

(http://mjane.zolaweb.com/snipframe.html) is about how I grew up

thinking my age peers were stupid. The title of the " snip " is "

'Stupid' People, " if you care to take a look.

Jane

[Guest guest]

leslieyoung41 wrote:

> My daughters now in a special

> program thats ok, except they are still trying to change her. So shes

> really depressed, wishing she were dead, etc.

I wish that her situation was unusual. There are only so many times

that you can be told that the way you think, the way you see things, the

way you are, is wrong, and that these odd, illogical people all around

you are right. A lot of normal people don't get this... whether they be

parents, teachers, or anyone else. To them, being normal is important,

so they see it as doing us a favor to force us to be normal, even if we

don't want to be normal. Our objections don't matter to them, because

they are just a sign of our " disease, " and once we are made normal, we

would presumably thank them.

Of course, if that were possible (to make us truly normal), we probably

would, because the individuals we had been, the ones that don't want to

be normal, would have been destroyed.

> The Dr has her on

> major medication that doesn't seem to help.THis makes sense as shes

> in the impossible situation of being expected to be something shes

> not and can't be.

Very true, and depression is the usual result of that. I've been there,

and so have many (if not most) others here.

> But they don't get that, so i suppose she will have

> to leave school in 6 months when she's 16. Has anyone else had

> schools do this to them?

In my case, it was not exactly in the manner you describe, but the

answer would have to be " yes " anyway. In my case, the school was not

trying to make me into something I was not... I grew up in the 1970s and

80s (born 1971), and I think that the conformism was not as bad then as

it is now. My problem was bullying... the other kids abused me pretty

strongly, and the teachers and other staff kind of had a nudge, nudge,

wink, wink response; that is, they did not see it as a big problem.

They saw the bullying as being something I brought on myself, and if I

would just be normal, it would stop.

It was bad enough for me that I still think I would have been better off

to have dropped out of school after the sixth grade. None of the

education was worth the abuse.

> What can we do about it? ( I suspect nothing

> but am hopeful there is something).

Some of the parents on AutAdvo seem to be making some progress in this

way. Personally, I can't think of a really good solution other than

home-schooling. Not everyone can do this, as they may have to work to

support the family, et cetera, but if it is a possibility, I think it

may be the best choice in many cases.

> Sorry about the long post. The

> fact that there MAY be other people out there who might know what I'm

> talking about has got me a BIT wired!!!

I know what it is like to be the abused, depressed kid. When I started

high school, I had already endured two years of bullying, but I still

managed to maintain a positive outlook. I had plans of going to college

and becoming a computer programmer.

By the time my junior year (11th grade) rolled around, I no longer

thought about college anymore. I no longer cared... not about making

something of my life, not about myself. I hated myself, and I hated

being different. I did not know why I was different (I was not

diagnosed until I was an adult), but I knew I was, and so did everyone

else. And to them, " different " was bad. It was a reason to abuse

someone.

By the time I was set to graduate, I was ready to drop out of school. I

would have, just weeks before graduation, if I had not been a minor, and

thus too young to do it without my parents' permission. I " knew " I was

garbage, and what better way to show it than to throw away my high

school diploma just before I was to get it?

Years later, after the better part of a decade in clinical depression, I

tried antidepressants, and they worked very well for me. I got back

most of what I had lost-- the only thing that really stands out as being

missing still is my ambition. I lost that in high school, and I still

have none.

>

>

>

>

>

[Guest guest]

,

I am not sure if you are aware of this but there is an effort

going on in Tucson to start a private school for aspergers youth. The

school would start with k-8 and grow to all years as the eighth grade

advances. They are thinking of expanding the scope to include the whole

spectrum of autism.

If you are interested in this, let me know.

Jerry Newport

[Guest guest]

since specific words and their specific meanings are important to my

understandings of the 'outside' world and those that are part of it, I must

maintain that for me and many others, NORMAL is not an approppriate word when

describing what I and others are not. my dna, my being me is NORMAL for me. I am

not abnormal- only different. my sister once questioned the importance I held in

being different. she now knows: it is not about an importance to be different,

it is only the acceptance that I am different- both my acceptance and hers.

what is normal for my brain and thought is different from some in some ways yet

same as some in some ways also.

the illogical concept that I and others are abnormal in a wrong way only

furthers my holding that if normal means right and abnormal means wrong- then

what is normal for me is right and to deny that and be reprogramed or forced to

change because some do not like my difference (the who and what I am) would be

abnormal/wrong for ME.

is this a fuzzy logic ? normal vs abnormal right vs wrong good vs bad

yin AND yang---not yin vs yang-----without one the other ceases to exist.

to those that see differences through absolute filters of right/wrong, good/bad,

normal/abnormal I can only reply: ones importance placed on being normal, right,

good requires that abnormal, wrong, and bad exist in others for them to set up

as the comparison so they can experience their normal right goodness. if it were

not for those of us to bully, ridicule, disrespect, and condemn they would not

exist. we are not the only grouping of persons they NEED to feel superior in

their normal right goodness.

NOT A JUDGEMENT- JUST AN OBSERVATION, willy

Re: New Member

[Guest guest]

Firstly, , sorry to hear about your awful experiences - particularly,

having a diagnosis

forced on you. I've never been to a doctor for a diagnosis, because I don't

want to be told

that my personality is a 'syndrome' or an 'ism'. Medicine is still in its

infancy as far as the

understanding of the brain and personality go, and doctors who make sweeping

decisions

about what is 'wrong' with people are overstepping the boundaries, in my

opinion. Also,

science likes to think it is an objective discipline, but it is not. Scientific

conclusions are

often heavily influenced by prejudice, particularly where social behaviour is

concerened.

I'd like to recommend a book for your daughter - Freaks, Geeks and Asperger

Syndrome

by Luke , a British teenager. He's very positive, and glad of who he is,

and very

sympathetic to the problems teenagers face at school.

Good luck and best wishes,

.

[Guest guest]

Hi and Thanks!,

Well she was even worse off in regular school.Kids stared, laughed,

and even scratched her for about a year before she finally fought back

.. She was blunt and said she wanted to kill the other girl. To make a

long story short, we were sent to the emergency room and she was

hospitalized for 2 weeks.We fought it but theres the we " ll take

custody threat they use. At that time there was no adult at home daily

to " keep her safe " . Fortunately her brothers 19 now and thats no

longer a problem.

The people in this program are really good with her, they try very

hard, but they also have these IEPs for which the child must show

progress. Her goals are things like socializing, looking people in the

eye, being positive. She tries, but can't always do it. So she loses

points and doesn't get things she likes, like chorus. She's very

sensitive and knows what they want her to do but can't always do it.

I've told them this, but I'm just the mom

I am beginning to think leaving school is the best answer because its

the pressure of school that makes her stressed. She has tested out of

high school level on most academic subjects and has the interests that

lead her to learn about alot of things. They call it persevering, I

call it research:-)!! I think the GED would be easy for her.

I tried for a long time to be like other people but I always seemed

to do something wrong. So then I decided to try to be nice in my own

way, if they take it wrong just try to brush it off. I've been working

on creating what my parents have for themselves: a home that is a safe

warm secure refuge from society's judgements, like a seperate world.

This may be seen as " unhealthy " but it got me through college and gets

me to force myself off to work everyday. I'm trying to teach the kids

that even if the world thinks they're odd, they can make their lives

good if they just don't worry what it thinks about them. They may not

be rich but there are things that are so much more important than that...

I guess it helped that my family has a very strong genetic

predisposition to this. I can't imagine what it would have been like

if my parents had tried to make me change too; there would have been

no refuge at all.

> Greetings, . Welcome to the group. This group is getting

quieter and quieter of late, though, but there's a bunch of other

sites around if you can find them. There's a couple of chatrooms on

several IRC channels around the place; ask and you shall receive a ton

of information about them. Most members of this group frequent several

sites.

......

> Danlo

>

> Send instant messages to your online friends

http://au.messenger.yahoo.com

>

>

[Guest guest]

Thanks you're site is very useful Thanks!

I hope the " I think theres something wrong with them " thing didn't

offend anyone: mostly its a defense thing that helps after a very hard

day when you've tried very hard and gotten nowhere. I never actually

say it to them, that would be mean! But they keep saying we are wrong

so sometimes I THINK it!

> Welcome, . Danlo is right that this group has been quiet

> lately. Its more active sibling can be found here:

> http://groups.yahoo.com/group/AutAdvo/

>

> Most people find it easier to read messages that are broken up into

> paragraphs. A solid block of type is harder that several shorter

> blocks.

>

> One of the " snips " on my " Snippets " page

> (http://mjane.zolaweb.com/snipframe.html) is about how I grew up

> thinking my age peers were stupid. The title of the " snip " is "

> 'Stupid' People, " if you care to take a look.

>

> Jane

[Guest guest]

I think a person has to look at how far they've come given the

circumstances they started with. For some people, like my daughter-

sometimes me- just getting out there in the world everyday is

something to be proud of. Ambition doesn't always have to be for the

things society thinks you should want, education, money, popularity,

etc...accepting yourself as a perfectly fine and valuable human being

is the most important ambition to have. At least thats what I tell

myself anyway. I'm on antidepressants too and they have helped. There

are still some bad times though...

You know, I bet that you have educated yourself more than you would

have been educated at college. ( Its not perserverating, its research

!! :-) ) I finally got to college and they just skim over subjects

pretty much. If you ever wanted to go to college, I bet you would do

great. The ability to focus on a subject in detail makes it easy.

Thats why I think this is a gift, not a curse ( except for the being

lonely sometimes but you can't have everything...)

>

> > My daughters now in a special

> > program thats ok, except they are still trying to change her. So shes

> > really depressed, wishing she were dead, etc.

>

> I wish that her situation was unusual. There are only so many times

> that you can be told that the way you think, the way you see things,

the

> way you are, is wrong, and that these odd, illogical people all around

> you are right. A lot of normal people don't get this... whether

they be

> parents, teachers, or anyone else. To them, being normal is important,

> so they see it as doing us a favor to force us to be normal, even if we

> don't want to be normal. Our objections don't matter to them, because

> they are just a sign of our " disease, " and once we are made normal, we

> would presumably thank them...

>

> >

> >

> >

[Guest guest]

WILLY SULLIVAN WROTE:

" to those that see differences through absolute filters of

right/wrong, good/bad,

normal/abnormal I can only reply: ones importance placed on being

normal, right,

good requires that abnormal, wrong, and bad exist in others for them

to set up

as the comparison so they can experience their normal right goodness.

if it were

not for those of us to bully, ridicule, disrespect, and condemn they

would not

exist. we are not the only grouping of persons they NEED to feel

superior in

their normal right goodness.

Hi,

Your post is true and does make sense. I personally don't mind if they

do all those mean things, they are going to anyway...where i work they

even do it to each other...but it would be nice if they waited until

the person was out of the room out of hearing before they do it!!!

There's no need to hurt somebody like that...and alot of people don't

realize how much it hurts.

At work we have a co-op, sophmore in college who i think has AS. I

feel bad for him, there's a couple of cute coop girls he just wants to

be friends with but they are offended at everything he says and does.

I personally can't see whats so offensive. I've told him they had

their turn on me too ( they had made him cry) and not to let them get

to him, but its still going on. And there's no need for it....

> since specific words and their specific meanings are important to my

understandings of the 'outside' world and those that are part of it, I

must maintain that for me and many others, NORMAL is not an

approppriate word when describing what I and others are not. my dna,

my being me is NORMAL for me. I am not abnormal- only different. my

sister once questioned the importance I held in being different. she

now knows: it is not about an importance to be different, it is only

the acceptance that I am different- both my acceptance and hers.

>

> what is normal for my brain and thought is different from some in

some ways yet same as some in some ways also.

>

> the illogical concept that I and others are abnormal in a wrong way

only furthers my holding that if normal means right and abnormal means

wrong- then what is normal for me is right and to deny that and be

reprogramed or forced to change because some do not like my difference

(the who and what I am) would be abnormal/wrong for ME.

>

> is this a fuzzy logic ? normal vs abnormal right vs wrong

good vs bad

>

> yin AND yang---not yin vs yang-----without one the other ceases to

exist.

>

> to those that see differences through absolute filters of

right/wrong, good/bad, normal/abnormal I can only reply: ones

importance placed on being normal, right, good requires that abnormal,

wrong, and bad exist in others for them to set up as the comparison so

they can experience their normal right goodness. if it were not for

those of us to bully, ridicule, disrespect, and condemn they would not

exist. we are not the only grouping of persons they NEED to feel

superior in their normal right goodness.

>

> NOT A JUDGEMENT- JUST AN OBSERVATION, willy

> Re: New Member

>

>

>

>

[Guest guest]

I guess I must be counted lucky. I have the classical egocentricity that

autistics are believed to have, the lack of theory of mind. I have never had

problems with expectations of others, teasing etc. I don't have trouble being

out with other people, I've always been perfectly happy in my own world. People

just don't bother attempting to interact with me. I never realized how well off

I must have it in comparison.

leslieyoung41 wrote:

I think a person has to look at how far they've come given the

circumstances they started with. For some people, like my daughter-

sometimes me- just getting out there in the world everyday is

something to be proud of. Ambition doesn't always have to be for the

things society thinks you should want, education, money, popularity,

etc...accepting yourself as a perfectly fine and valuable human being

is the most important ambition to have. At least thats what I tell

myself anyway. I'm on antidepressants too and they have helped. There

are still some bad times though...

You know, I bet that you have educated yourself more than you would

have been educated at college. ( Its not perserverating, its research

!! :-) ) I finally got to college and they just skim over subjects

pretty much. If you ever wanted to go to college, I bet you would do

great. The ability to focus on a subject in detail makes it easy.

Thats why I think this is a gift, not a curse ( except for the being

lonely sometimes but you can't have everything...)

>

> > My daughters now in a special

> > program thats ok, except they are still trying to change her. So shes

> > really depressed, wishing she were dead, etc.

>

> I wish that her situation was unusual. There are only so many times

> that you can be told that the way you think, the way you see things,

the

> way you are, is wrong, and that these odd, illogical people all around

> you are right. A lot of normal people don't get this... whether

they be

> parents, teachers, or anyone else. To them, being normal is important,

> so they see it as doing us a favor to force us to be normal, even if we

> don't want to be normal. Our objections don't matter to them, because

> they are just a sign of our " disease, " and once we are made normal, we

> would presumably thank them...

>

> >

> >

> >

[Guest guest]

I will definitely try to find that book for her! She needs to know

she's ok, seems when i say it it doesn't count because i am her mother!!!

I haven't been diagnosed as such either, mine is " adjustment disorder "

but I have figured it out by myself, its pretty obvious. Then again, I

didn't tell them about any of that, my researching, tics in private,

seperateness etc because i guess i just don't trust them...i'm sure i

would have alot less input with the school if they knew i was AS too.

I fake really well, kids used to be mean to me so i just learned to

pretend as well i can to not attract attention. My son has learned to

do this too, i'm hoping will also but it seems harder for

her... if she can't then she'll just make herself another kind of good

life, with our help.

Thanks!

> Firstly, , sorry to hear about your awful experiences -

particularly, having a diagnosis

> forced on you. I've never been to a doctor for a diagnosis, because

I don't want to be told

> that my personality is a 'syndrome' or an 'ism'. Medicine is still

in its infancy as far as the

> understanding of the brain and personality go, and doctors who make

sweeping decisions

> about what is 'wrong' with people are overstepping the boundaries,

in my opinion. Also,

> science likes to think it is an objective discipline, but it is not.

Scientific conclusions are

> often heavily influenced by prejudice, particularly where social

behaviour is concerened.

>

> I'd like to recommend a book for your daughter - Freaks, Geeks and

Asperger Syndrome

> by Luke , a British teenager. He's very positive, and glad

of who he is, and very

> sympathetic to the problems teenagers face at school.

>

> Good luck and best wishes,

> .

[Guest guest]

Btw, just to let you know, a good site which I frequent and you might like, has

has parent forums, school forums, work forums and other things on it. Some of

them are quite good. It is an Aspie site run by Aspies. It can be found at:

www.wrongplanet.net

Another good site is: http://www.aspires-relationships.com/

It has some cool articles too. They don't take the view that AS is a disability,

either.

Send instant messages to your online friends http://au.messenger.yahoo.com

[Guest guest]

wrote:

>The people in this program are really good with her, they try very

>hard, but they also have these IEPs for which the child must show

>progress. Her goals are things like socializing, looking people in the

>eye, being positive. She tries, but can't always do it. So she loses

>points and doesn't get things she likes, like chorus. She's very

>sensitive and knows what they want her to do but can't always do it.

>I've told them this, but I'm just the mom

You can call for an IEP review meeting any time (though you probably

will need to be fairly aggressive in order to make it happen). When

creating the new IEP, refuse to include anything like a " points "

system. That kind of thing piles on stress and therefore is

counter-productive.

The IEP is not official until you sign it. No matter what dire

warnings/threats they make, refuse to sign it until it gives your

daughter what she needs. You can take a lawyer or an advocate to the

meeting, and you can tape it as long as you do it opening.

For sample IEPs, go to http://www.udel.edu/bkirby/asperger/, click

on Education in the menu on the left, and scroll down to the " Sample

IEP and ARD Documents " section. You can join a list of parents-of at

http://www.consultmac.com/AS/ if you want a chance to ask specific

questions and get answers from a large number of parents who have

been through every IEP struggle imaginable (and learned a great deal

in the process).

Jane

[Guest guest]

So you can just get on with your life, do whats important to you and

not worry, that really IS a good thing! Alot of time can be wasted

feeling bad. Thats what I'm trying to do, make my own world as much as

possible, but people keep poking in. Its the school mostly, they are

so into " social engineering " now if your kids are different they think

it must be fixed. But they'll be grown soon anyway.

Alot of the time I wish people wouldn't try to interact with me, it

makes me nervous

> >

> > > My daughters now in a special

> > > program thats ok, except they are still trying to change her.

So shes

> > > really depressed, wishing she were dead, etc.

> >

> > I wish that her situation was unusual. There are only so many times

> > that you can be told that the way you think, the way you see things,

> the

> > way you are, is wrong, and that these odd, illogical people all

around

> > you are right. A lot of normal people don't get this... whether

> they be

> > parents, teachers, or anyone else. To them, being normal is

important,

> > so they see it as doing us a favor to force us to be normal, even

if we

> > don't want to be normal. Our objections don't matter to them,

because

> > they are just a sign of our " disease, " and once we are made

normal, we

> > would presumably thank them...

> >

> > >

> > >

> > >

[Guest guest]

Gerald Newport wrote:

> I am not sure if you are aware of this but there is an effort going

> on in Tucson to start a private school for aspergers youth. The

> school would start with k-8 and grow to all years as the eighth grade

> advances. They are thinking of expanding the scope to include the

> whole spectrum of autism.

>

> If you are interested in this, let me know.

Yes, please let me know how it is going. Thanks.

[Guest guest]

,

I think some of the parents probably heard you at the

conference last summer. Bullying and the avoidance of it is certainly a high

priority. I think your experience would be a huge plus. The meeting I went

to last week had about twenty people there. It is not going to happen right

away and probably will take a year before it opens.

They seem more open-minded than typical parents. They don't seem

interested in cures but don't their kids to be abused or miserable.

The next meeting is on June 28th at a location near skyline

and wilmot.

Jerry Newport

[Guest guest]

Mike wrote:

>We had a sailboat so we loaded up all our possessions, sold the car

>for a watermaker and we have been cruising around the Caribbean for

>over two years now.

One of my sisters had a friend who (with her husband) did the same

thing, only in Scandinavian waters.

>What sort of companies employ aspies happily, is there any hope?

From what I've heard, it's getting harder and harder to find such

places. I have found a niche at a University (I'm staff, not

faculty), but I don't think the " entryway " I used more than 20 years

ago exists anymore.

Jane

[Guest guest]

Ahem. Guess I'd best introduce myself. You can call me Kei (it's short for my

real name which a lot of folks find to be awkward pronunciation-wise). I'm from

Mississauga, Ontario, Canada -born in Nottingham, England- and today's my 44th

birthday.

 

As the subject line indicates, I'm a new member -thank you to the moderator for

accepting me- and I hope than I can make a good contribution here.

 

I'm a chronic pain patient. I honestly cannot remember the last day where

intense pain of some kind was not a significant part of my life. My first

migraine occurred when I was about 5 years old. I started having minor(?)

burning pain in my the joints of my lower body about the same time (which then

was put off to my being plump). I also suffered recurrent episodes of cramping

" stomach flu " . About 10 years ago, I was diagnosed as having rheumatoid

arthritis (which has since spread to my spinal column and most recently, my

hands -total bummer since I'm a graphic artist). About 5 years ago, I was

diagnosed with Irritable Bowel Syndrome (the source of most of my " stomach flu "

bouts). About 2 years ago, came the diagnosis of of Fibromyalgia. I'm presently

under treatment for ulcers caused/made worse by use of analgesics (most recently

Arthrotec and then Celebrex).

My migraines are treated by use of Extra-Strength Advil, or Tylenol-C, or

Fiorinal-C, or -rarely so far- Demerol.

 

I am also a type2 diabetic and have anxiety syndrome.

 

My family is generally supportive of my condition, but it depresses me to be so

dependent on them -especially on days when I can barely get about or stand up

without a helping hand (especially as my mother has her own back and knee pains

to deal with). Huh...this is the most I've said about my situation to anyone

(except my doctor) and I thank you all for letting me do so.

 

If anyone can give me some advice (pain management, therapy, diet, etc) I would

be grateful. If I can help, I'll do my best.

 

-Kei

 

 

[Guest guest]

Hi Kei,

 

I'm Rita and I am glad you joined our group. I hope you find friendship here as

I have. The people here are supportive and loving. Let me know if I can help

you. Here is a run down of my personal ailments. I have: diabetes, peripheral

neuropathy, COPD, sleep apnea, arthritis, spinal stenosis, two failed back

surgeries, degenerative disc disease, heart disease, ect., ect., ect. You get

the picture...I'm screwed up!!! LOL Some days my pain is worse than others but

one thing is for sure, I have pain every day, all day long. I try not to let it

get me down. I don't talk to my family about it because they don't understand.

That is why I come here, because these people do understand. They don't tell me

I am lazy or pretending and they don't put me down for having to take pain

medications. I'm glad you are here.

LIVE AND LET LIVE

RITA 

 

Subject: New Member

To: Hugs-N-Pain

Date: Wednesday, September 3, 2008, 6:23 PM

Ahem. Guess I'd best introduce myself. You can call me Kei (it's short for my

real name which a lot of folks find to be awkward pronunciation- wise). I'm from

Mississauga, Ontario, Canada -born in Nottingham, England- and today's my 44th

birthday.

 

As the subject line indicates, I'm a new member -thank you to the moderator for

accepting me- and I hope than I can make a good contribution here.

 

I'm a chronic pain patient. I honestly cannot remember the last day where

intense pain of some kind was not a significant part of my life. My first

migraine occurred when I was about 5 years old. I started having minor(?)

burning pain in my the joints of my lower body about the same time (which then

was put off to my being plump). I also suffered recurrent episodes of cramping

" stomach flu " . About 10 years ago, I was diagnosed as having rheumatoid

arthritis (which has since spread to my spinal column and most recently, my

hands -total bummer since I'm a graphic artist). About 5 years ago, I was

diagnosed with Irritable Bowel Syndrome (the source of most of my " stomach flu "

bouts). About 2 years ago, came the diagnosis of of Fibromyalgia. I'm presently

under treatment for ulcers caused/made worse by use of analgesics (most recently

Arthrotec and then Celebrex).

My migraines are treated by use of Extra-Strength Advil, or Tylenol-C, or

Fiorinal-C, or -rarely so far- Demerol.

 

I am also a type2 diabetic and have anxiety syndrome.

 

My family is generally supportive of my condition, but it depresses me to be so

dependent on them -especially on days when I can barely get about or stand up

without a helping hand (especially as my mother has her own back and knee pains

to deal with). Huh...this is the most I've said about my situation to anyone

(except my doctor) and I thank you all for letting me do so.

 

If anyone can give me some advice (pain management, therapy, diet, etc) I would

be grateful. If I can help, I'll do my best.

 

-Kei

 

 

[Guest guest]

Welcome Kei!!

Happy Belated 44th Birthday! Nice to meet you! There are truly a lot of great

people here at this group. You really won't regret joining and just to let you

know. Things you might have read on here yesterday, is not our normal behavior.

I hope none of this runs you off. Hang around a few days, you'll see how truly

loving and supportive this group is. I've been a member about 4 yrs now.

Now to the illnesses. I too have Fibro and Diabetes. I also have OsteoArthritis,

which is nothing compared to RA, but I do understand your pain and frustration

with diabetes. I'm Type 2 as well. I didn't start out as young as you did, bless

your heart I'm so sorry you've lived such a rough life thus far. It can only

get better, right? If not the physical aspects, the emotional aspects can and

that does help. I've been sick for 13 yrs and I still get frustrated at times.

You are so very blessed that your family is supportive and there for you. You

have traveled such a long road What is your pain currently treated with for

the fibro? The Analgesics seem to work the best. The Opiates are what most of us

are on. As well as muscle relaxers. Personally I take long acting Morphine as

well as short acting for break thru pain. Do you see a Pain Management

Specialist? If not, I highly recommend it. They can better treat your pain over

all. As far as the diabetes, what kind of problems are you having? What type of

meds do you take?

I look forward to hearing back from you Kei. And hope you are having a decent

day.

Hugs

~Tommie~

www.myspace.com/tommiejj

PH, CFS, FMS, Diabetes, Sleep Apnea, Restless Leg Syndrome

Don't waste energy second-guessing what you're missing or

what can go awry. If you put enough energy into doubt,

something will undoubtedly go wrong.

Instead, focus on the positive possibilities with a hopeful attitude.

New Member

Ahem. Guess I'd best introduce myself. You can call me Kei (it's short for my

real name which a lot of folks find to be awkward pronunciation-wise). I'm from

Mississauga, Ontario, Canada -born in Nottingham, England- and today's my 44th

birthday.

As the subject line indicates, I'm a new member -thank you to the moderator

for accepting me- and I hope than I can make a good contribution here.

I'm a chronic pain patient. I honestly cannot remember the last day where

intense pain of some kind was not a significant part of my life. My first

migraine occurred when I was about 5 years old. I started having minor(?)

burning pain in my the joints of my lower body about the same time (which then

was put off to my being plump). I also suffered recurrent episodes of cramping

" stomach flu " . About 10 years ago, I was diagnosed as having rheumatoid

arthritis (which has since spread to my spinal column and most recently, my

hands -total bummer since I'm a graphic artist). About 5 years ago, I was

diagnosed with Irritable Bowel Syndrome (the source of most of my " stomach flu "

bouts). About 2 years ago, came the diagnosis of of Fibromyalgia. I'm presently

under treatment for ulcers caused/made worse by use of analgesics (most recently

Arthrotec and then Celebrex).

My migraines are treated by use of Extra-Strength Advil, or Tylenol-C, or

Fiorinal-C, or -rarely so far- Demerol.

I am also a type2 diabetic and have anxiety syndrome.

My family is generally supportive of my condition, but it depresses me to be

so dependent on them -especially on days when I can barely get about or stand up

without a helping hand (especially as my mother has her own back and knee pains

to deal with). Huh...this is the most I've said about my situation to anyone

(except my doctor) and I thank you all for letting me do so.

If anyone can give me some advice (pain management, therapy, diet, etc) I

would be grateful. If I can help, I'll do my best.

-Kei

[Guest guest]

Hugs Terry, Fibro is bad enough to deal with on its own.

~Tommie~

www.myspace.com/tommiejj

PH, CFS, FMS, Diabetes, Sleep Apnea, Restless Leg Syndrome

Don't waste energy second-guessing what you're missing or

what can go awry. If you put enough energy into doubt,

something will undoubtedly go wrong.

Instead, focus on the positive possibilities with a hopeful attitude.

New Member

To: Hugs-N-Pain

Date: Wednesday, September 3, 2008, 4:23 PM

Ahem. Guess I'd best introduce myself. You can call me Kei (it's short for my

real name which a lot of folks find to be awkward pronunciation- wise). I'm from

Mississauga, Ontario, Canada -born in Nottingham, England- and today's my 44th

birthday.

As the subject line indicates, I'm a new member -thank you to the moderator

for accepting me- and I hope than I can make a good contribution here.

I'm a chronic pain patient. I honestly cannot remember the last day where

intense pain of some kind was not a significant part of my life. My first

migraine occurred when I was about 5 years old. I started having minor(?)

burning pain in my the joints of my lower body about the same time (which then

was put off to my being plump). I also suffered recurrent episodes of cramping

" stomach flu " . About 10 years ago, I was diagnosed as having rheumatoid

arthritis (which has since spread to my spinal column and most recently, my

hands -total bummer since I'm a graphic artist). About 5 years ago, I was

diagnosed with Irritable Bowel Syndrome (the source of most of my " stomach flu "

bouts). About 2 years ago, came the diagnosis of of Fibromyalgia. I'm presently

under treatment for ulcers caused/made worse by use of analgesics (most recently

Arthrotec and then Celebrex).

My migraines are treated by use of Extra-Strength Advil, or Tylenol-C, or

Fiorinal-C, or -rarely so far- Demerol.

I am also a type2 diabetic and have anxiety syndrome.

My family is generally supportive of my condition, but it depresses me to be

so dependent on them -especially on days when I can barely get about or stand up

without a helping hand (especially as my mother has her own back and knee pains

to deal with). Huh...this is the most I've said about my situation to anyone

(except my doctor) and I thank you all for letting me do so.

If anyone can give me some advice (pain management, therapy, diet, etc) I

would be grateful. If I can help, I'll do my best.

-Kei