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In a message dated 4/4/00 11:29:47 AM Eastern Daylight Time, taebotig@...

writes:

<< Im not sure if mary has said this Im kind of behind on my mails but My pic

is

up with my intro on the website if anyone wants to put a face with my

emails. >>

Was that you in the wedding dress? I hope I looked up the right Angie! You

are pretty!!

:) who finally saw Pam's picture and thinks she is beautiful too!

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In a message dated 4/4/2000 11:41:04 AM Eastern Daylight Time,

agaw12577@... writes:

<< Was that you in the wedding dress? I hope I looked up the right Angie! You

are pretty!! >>

yes that was me and thank you for the compliment. That was Nov 96 so it was a

little over 3 years old but I look the same no major changes. Its the only

decent before pic I have on a disc and I dont have a scanner yet. But I have

a few more on negatives I am going to put on a disc that are far from

flattering. But Im not worried because one day I am going to be able to look

at those pics and say wow Ive came a long way!!!

Angie (Tig)

ICQ-46432916

AIM-Tyggyrow

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My heart and prayers go out to you. If at anytime you can think of anything

at all I can do to help you please let me know. We are all here for you.

Tina

>From: janalise <serene@...>

>Reply-egroups

><ChronicChatteregroups>, CLUTTERegroups,

>egroups, pastorswivesegroups, <JudgeCill@...>

>Subject: me

>Date: Sun, 09 Apr 2000 10:10:35 -0600

>

>I am sorry to be o slow about writing, but I come to you in need of serious

>prayer. My leg is not healing and last night an ulceration opened on the

>top of

>my foot. I am going to see the doctor tomorrow - and will ask him to stop

>trying to ave this sinking ship and save my life by amputating the leg.

>Please Pray the Gods Will Be Done.

>

>In Him,

>janalise

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"I am going to see the doctor tomorrow - and will ask him to stop trying to ave this sinking ship and save my life by amputating the leg."

Dearest Jana,

That is a very brave decision and must have been very difficult to make. Please let us know how you get on and what is going to happen.

Bright Blessings Sweet One,

Aisha.

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"I am going to see the doctor tomorrow - and will ask him to stop trying to ave this sinking ship and save my life by amputating the leg."

Dearest Jana,

That is a very brave decision and must have been very difficult to make. Please let us know how you get on and what is going to happen.

Bright Blessings Sweet One,

Aisha.

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Now I don't know what to do - so I am inert. But I am making myself keep

the appointments today and then decide if I want to see the doc Thiursday

or wait. I am hoping is just going through pre-Easter stress... He

has a low stress threshold.

Sad think is I called the President of our church council and he siad ye

- keith could stay if the kids and I were not in his life.... sweet,

eh?

janalise - who will be off-line much of today.

At 11:35 AM 4/11/00 +1000, you wrote:

" I am

going to see the doctor tomorrow - and will ask him to stop trying to ave

this sinking ship and save my life by amputating the

leg. "

Dearest Jana,

That is a very brave decision and must have been very

difficult to make. Please let us know how you get on and what is going to

happen.

Bright Blessings Sweet One,

Aisha.

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"President of our church council and he siad ye - keith could stay if the kids and I were not in his life.... sweet, eh?"

If you believe in the fatherhood of god then you must also believe in the brotherhood of man.

So much for the "brotherhood" of man.

I think this president should chose a new career!

Love you, Aisha.

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Does keith have anyone that he leans on for support?

Just wonderin' maybe he's feeling overwhelmed and doesnt know where to

turn?

Could that be?

sheena :)

janalise wrote:

> . I am hoping is just going through pre-Easter stress... He has

> a low stress threshold.

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You hang in there and stay off your feet. Hope you get to feeling better

soon.

Tina 1

>From: »§» <serene@...>

>Reply-egroups

><ChronicChatteregroups>, egroups

>Subject: me

>Date: Sun, 16 Apr 2000 09:29:14 -0600

>

>hello - it's me for a moment... on my way to the bathroom =o) took a short

>detour. i read phillip note - as usual he worried over nothing... as i am

>fine. just a nasty fall and sickie spell - which we all have... i will be

>fine, i am fine... i am just going to rest most of today and we'll see what

>the week brings =o) I was to drive today for the first time in over a year

>- but I don't think I will... so you are all safe =o) LoL Other than a few

>new myoclonic jerks and other seizure stuff I am okee dokee... so please

>don't worry about me...

>janalise

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Hi Jana,

hello - it's me for a moment... on my way to the bathroom =o) took a shortdetour. i read phillip note - as usual he worried over nothing... as i amfine. just a nasty fall and sickie spell - which we all have...

Jana hon, if your son is worried about you I am sure it is with good reason!!

Other than a few new myoclonic jerks and other seizure stuff I am okee dokee... so please don't worry about me...

I get myoclonics too and seizure thingies so I know how serious this is... so cant fool me. Hon, get yourself to the ER or at least phone your doctor ok.

Thinking of you Janalise - please look after yourself.

Love Aisha

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Hello me

How are you doing/ Is still around? How is the family thing going?

Is there anyway you can get your computer and bed in the one place so you

can be good and keep Aisha happy by resting but also keep the addiction to

e-mail happy!!

Take care of yourself everyone is worried about you, in case you didn't

notice!!!

Back to bed now

Nerys

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Jana...we are worrying...so be careful....I was away all weekend...but from the

letters I've read.....you've been hen pecked eh?

Sheena:)

»§» wrote:

> hello - it's me for a moment... on my way to the bathroom =o) took a short

> detour. i read phillip note - as usual he worried over nothing... as i am

> fine. just a nasty fall and sickie spell - which we all have... i will be

> fine, i am fine... i am just going to rest most of today and we'll see what

> the week brings =o) I was to drive today for the first time in over a year

> - but I don't think I will... so you are all safe =o) LoL Other than a few

> new myoclonic jerks and other seizure stuff I am okee dokee... so please

> don't worry about me...

> janalise

>

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

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

>

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makes no difference to how you are feeling. You are the only one who feels as

you do, and you have every right to be negative or upset when you are ill,

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deserves being sick. It is not fair.” - Aisha.

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  • 1 month later...
Guest guest

Hi Janalise

Sorry to hear thing are still go rough for you in your part of the world, know that we are all here for you and that there are lots of shoulders to lean on.

You have to remember that you are doing the best that you can in a very difficult time and I think you are very brave and you hang in there.

You take care of yourself sweetie!!

Can you get any help from gov ie social security payments? Help with raising kids etc?

How are things with K? Is he supportive hon?

Please know that we are all here *HUGS*

Take care

Lots of love

Nerys

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  • 2 years later...

ME, ME, ME !!! I desire to read it :o)

To anyone who desires to read this:

It does help when you at least have a diagnosis doesn't it... That's Half the battle... Glad that you finally found a caring Doctor :o) That's Extremely helpful :o) Needing help for over 20 years that is just shameful that you went untreated :o( I'm afraid quit a few of us on here had to go through the same as you, having to go so long without the right diagnosis :o(

How did they find out that you are losing nerve function??? By a test??? or just the way you are using your limbs??? You can still have lupus!!! My tests took almost three years to finally come in positive... But the Rhuematologist that I had then, Knew a lot about it and all the symptoms and treated me for it with plaquanil. which put it in remission for a while till this year :o( so back on the plaquanil I went...

Yayyyyy for winning Over the Depression!!! :o)

How many of you out there Haven't been

depressed from your illnesses????

:o( Sorry about the divorce :o( Having a child, no matter what the age is hard on them when the home breaks up :o( You just keep on fighting for her rights and yours also!!! You are doing the Right things, as long as you are doing the Best that you know how too!!! q:o)

Sorry about how you had to grow up :o( I Do So Hate people that have to be abusive to children!!!! Can't they pick on somebody their own size that can at least try to fight back! :o(

You keep on postin and letting it ALL out and we be here a listenin :o) Hopefully others will Talk also! :o)

Its too EARLY for another Roll call Folks !!!

Keep us posted Maggie :o)

((( Rainbow Hugs )))

Helen

At Helen's suggestion I thought I would write and relay a bit about

myself. I have been struggling with mainly (I guess) my

Lymphadema/Fibromyalgia for approx. 20 years. None of the doctors

could figure out what was wrong with me until 2 years ago. Usually

it was a pat on the head or "you are too complicated" or "your

insurance doesn't cover anything that we can do for you"...always

pleasant. I finally by chance found a doctor who specialized in

Lymphadema and was supportive too boot...She did all the right tests

and confirmed the severity of the disorder as well as telling me that

I also had Lipadema, yea!! At least I finally had somewhat of an

answer. No one has been able to determine what is causing me to

loose nerve function however pretty much throughout my body. My

hands and feet being the worse. I suspect it may be related to the

recently diagnosed Diabetes and the fact that it took so long to get

them to listen to me and do the tests. They felt I had Lupus for a

long time (and who knows?) I have all the symptoms but the doctor who

treats my Lymphadema told me that all those symptoms also relate to

the Lymphadema. I have been living with the pain, very intense at

times since I can remember. They currently have me on Celebrex which

takes the edge off at least. I use meditation, relaxation therapy to

help me cope and my sense of humor. Not much of me doesn't hurt but

my neck and hands/arms, knees are usually the worse. My nerves fire

off unexpectedly all the time which makes life interesting as

well... I fight fatigue almost all the time and have to incorporate

naps into my schedule which I find embarrasing at times. Doesn't

help either when I have a ton of stuff to do!! I have to chose my

projects so to speak. I also fight depression (have done this since

I was 5)on a daily basis and win most of the time.

About my family...I am in the process of going through a divorce (the

only thing holding up completion is trying to figure out how to

continue having health care and how I will afford that) and live with

my 13 year old daughter who is high functioning Autistic/seizure

disorder/behavioral difficulties, and my best friend who I ironically

met through chats. He must love me cause he came to CA from

VA, via Greyhound which I am sure will generate a book at some

point! He is very supportive and trys his best to support both of

us. We are so much alike it is scary at times!! His caring and

support keep me going but I don't always want to burden him with all

that goes on with me. My biological family all live in Florida and

we try to keep in touch. I come from a very abusive background

growing up so that comes with it's own strain. The abuse covered all

areas and after years of therapy (and a couple of fantastic

therapists!) I am a 100% better. It's nice not to be in therapy all

the time!! Right now I am struggling with helping my daughter

through a very difficult time, struggling with the school system (I

have just acquired-supposedly a full time aide for her) trying to

help her find her way through her depression and behavioral

problems. She was in the hospital over the holidays and that was

difficult to cope with but we did it somehow. Now I am trying to

stabalize her so that she can go back to school and hopefully have

some normalicy. Her Dad is not a whole lot of help, has trouble

relating emotionally, communicating and overall with parenting. I am

trying to get her to accept him for who he is and understand that

changing is up to him. Sigh... That's sort of the short (HA!) form

of it all. I joined the group because I just feel so overwhelmed at

times and wonder whether I am doing the right things for her or me.

It has been hard for my daughter suddenly having finances so tight,

and lots and lots of changes. I just keep trying and hope I get it

right somehow. For now my continuing education (Psych degree-

research) is on hold until all stabalizes a bit...

Thanks for listening (reading)

Maggie

{0} {0} {0} {0} {0} {0} {0} {0} {0}

^\|/ ^ \|/ ^ \|/ ^ \|/ ^ \|/ ^ \|/ ^ \|/ ^ \|/ ^ \|/^

**** **** **** **** **** **** **** **** ****

~~~THINK SPRING ~~~

angelbear1129@...

:o)

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Welcome to the group Maggie. I am high functioning autistic and have OCD

and a few physical illness. Back when I was in school there was very

little for autistics that were intelligent and could talk so my school

years were hellish. I can probably relate to some of the behaviour

things with your daughter and I have been in hospitals a few times since

I was 15 because of my behaviour and difficulty coping in living

situations. What is siezure disorder?

Take care,

CZ

Maggie wrote:

> To anyone who desires to read this:

>

> At Helen's suggestion I thought I would write and relay a bit about

> myself. I have been struggling with mainly (I guess) my

> Lymphadema/Fibromyalgia for approx. 20 years. None of the doctors

> could figure out what was wrong with me until 2 years ago. Usually

> it was a pat on the head or " you are too complicated " or " your

> insurance doesn't cover anything that we can do for you " ...always

> pleasant. I finally by chance found a doctor who specialized in

> Lymphadema and was supportive too boot...She did all the right tests

> and confirmed the severity of the disorder as well as telling me that

> I also had Lipadema, yea!! At least I finally had somewhat of an

> answer. No one has been able to determine what is causing me to

> loose nerve function however pretty much throughout my body. My

> hands and feet being the worse. I suspect it may be related to the

> recently diagnosed Diabetes and the fact that it took so long to get

> them to listen to me and do the tests. They felt I had Lupus for a

> long time (and who knows?) I have all the symptoms but the doctor who

> treats my Lymphadema told me that all those symptoms also relate to

> the Lymphadema. I have been living with the pain, very intense at

> times since I can remember. They currently have me on Celebrex which

> takes the edge off at least. I use meditation, relaxation therapy to

> help me cope and my sense of humor. Not much of me doesn't hurt but

> my neck and hands/arms, knees are usually the worse. My nerves fire

> off unexpectedly all the time which makes life interesting as

> well... I fight fatigue almost all the time and have to incorporate

> naps into my schedule which I find embarrasing at times. Doesn't

> help either when I have a ton of stuff to do!! I have to chose my

> projects so to speak. I also fight depression (have done this since

> I was 5)on a daily basis and win most of the time.

>

> About my family...I am in the process of going through a divorce (the

> only thing holding up completion is trying to figure out how to

> continue having health care and how I will afford that) and live with

> my 13 year old daughter who is high functioning Autistic/seizure

> disorder/behavioral difficulties, and my best friend who I ironically

> met through chats. He must love me cause he came to CA from

> VA, via Greyhound which I am sure will generate a book at some

> point! He is very supportive and trys his best to support both of

> us. We are so much alike it is scary at times!! His caring and

> support keep me going but I don't always want to burden him with all

> that goes on with me. My biological family all live in Florida and

> we try to keep in touch. I come from a very abusive background

> growing up so that comes with it's own strain. The abuse covered all

> areas and after years of therapy (and a couple of fantastic

> therapists!) I am a 100% better. It's nice not to be in therapy all

> the time!! Right now I am struggling with helping my daughter

> through a very difficult time, struggling with the school system (I

> have just acquired-supposedly a full time aide for her) trying to

> help her find her way through her depression and behavioral

> problems. She was in the hospital over the holidays and that was

> difficult to cope with but we did it somehow. Now I am trying to

> stabalize her so that she can go back to school and hopefully have

> some normalicy. Her Dad is not a whole lot of help, has trouble

> relating emotionally, communicating and overall with parenting. I am

> trying to get her to accept him for who he is and understand that

> changing is up to him. Sigh... That's sort of the short (HA!) form

> of it all. I joined the group because I just feel so overwhelmed at

> times and wonder whether I am doing the right things for her or me.

> It has been hard for my daughter suddenly having finances so tight,

> and lots and lots of changes. I just keep trying and hope I get it

> right somehow. For now my continuing education (Psych degree-

> research) is on hold until all stabalizes a bit...

>

> Thanks for listening (reading)

>

> Maggie

>

>

>

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Maggie Gandee wrote:

>

>

> */Creepy Zucchini <creepyzucchini@...>/* wrote:

>

> Welcome to the group Maggie. I am high functioning autistic and have

> OCD

> and a few physical illness. Back when I was in school there was very

> little for autistics that were intelligent and could talk so my school

> years were hellish. I can probably relate to some of the behaviour

> things with your daughter and I have been in hospitals a few times

> since

> I was 15 because of my behaviour and difficulty coping in living

> situations. What is siezure disorder?

>

> Take care,

>

> CZ

>

>

> CZ,

>

> Thank you for writing to me, Sara my daughter also has Epilepsy (or

> seizure disorder). She has absence seizures where she stares

> basically at nothing and it lasts from 10 seconds to a minute in

> length to which she doesn't remember. Sometimes it can cause her to

> be dizzy or have an upset stomach afterwards, but not too often.

> Her medicine that she takes controls this and also seems to help

> with the Autism related problems. She has a right temporal

> abnormality in her brain as well and this has caused some violent

> episodes that she hasn't remembered. She rarely has these anymore

> since on medication. She has been facing alot of difficulty lately,

> the schools here in CA aren't geared towards high functioning

> autistics in any way, shape or form. She doesn't want to go back

> even though I am getting her a full time aide. We shall see. I am

> capable of teaching her myself but she really needs to have social

> interactions that I can not provide by myself. The divorce has been

> hard on her and she has faced other loses in the past year also.

> Her depression and anger have been getting the better of her lately,

> as well as what I fear may be the likelihood of an eating disorder

> developing. I fear it is few and far between the people that

> understand and appreciate her talents like I do. I totally

> understand why she doesn't want to go back to school, I wouldn't

> either. But I feel that with my health I need to give the aide a

> shot. I seemed to know how to help her when she was little, now

> that she is 13 and all that goes with that, I am not as sure and

> just pray that I do the right things. Thank you for writing and I

> hope all is going well with you right now...

I can understand a lot of that. I had anorexia nervosa from age 14-15

until 20 when I was fed with a NG. I do have problems with getting

nutrition from food regardless and that probably made it easier for me

to lose weight than most anorexics would (I still am thin but I eat like

a pig now) and the anorexia in me was a lot about numbers rather than

image and it started with a nasty remark from my mother that caused me

to decide to diet. She said " if you ever get to 50kg I'm taking you to

Craig " and when I went afterwards to get on the scales I was 57kg

and ever since I have a real problem with the number 50. I hope your

daughter does not get an eating disorder because it is harder to recover

than to get worse.

What medicines does your daughter take? I am on Seroquel and Luvox. The

Seroquel controls my behaviour and I have not had a bad meltdown since I

was on it. I have home help staff that come on Monday, Tuesday and

Wednesday of each week and they help with going to appointments and with

chores and keeping organised. I also have a respite carer that comes

every second Thursday to help with shopping but she irritates me because

she always says " my niece is a bit like you she's got a few problems and

she's a bit retarded " and suggests that I cook things out of packets

when I already made a list of what I need and I know how to cook because

I got a good grade in home economics and I learned at home for fun.

I am enrolled in Computer Science at university and I got into that from

a bridging course for people with disadvantages. I failed lower

secondary school and got put in an adolescent hospital for my behaviour

halfway in the 11th grade when I was still failing. I did alright on

homeschool in 8th and 9th grade but my father was abusive to me and I

ran away to my mother (who also was) and got put back in mainstream school.

Having a family break up is difficult and really difficult for autistic

people because we do not like change and it can be very upsetting. I

hope things get better for you and your daughter.

CZ

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I have a 17 year old brother who is a high-functioning autistic as well.

I prefer to call him exceptionally gifted. He is so amazing, and a

wonderful person...but a brat because he's my brother! LOL I think our

largest supports are each other, because I have learning disabilities.

I'd find out the hard way how to do something, and I'd find an easier

way to teach him. He has a very hard time with OCD, he has a germ

compulsion. I think that is a lot of the reason that I am in nursing

school. When he got sick, he would only let me come in his room to care

for him, because I was " clean " . I moved out of the house 5 years ago,

and he is still struggling with it. We are 7 years apart, so we have

had more of a mother-son relationship, sort of. I think that CZ would

be a great resource for you and your daughter, and could help you both.

Hugs,

---

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Maggie Gandee wrote:

>

>

> */Creepy Zucchini <creepyzucchini@...>/* wrote:

>

> I can understand a lot of that. I had anorexia nervosa from age 14-15

> until 20 when I was fed with a NG. I do have problems with getting

> nutrition from food regardless and that probably made it easier for me

> to lose weight than most anorexics would (I still am thin but I eat

> like

> a pig now) and the anorexia in me was a lot about numbers rather than

> image and it started with a nasty remark from my mother that caused me

> to decide to diet. She said " if you ever get to 50kg I'm taking you to

> Craig " and when I went afterwards to get on the scales I was 57kg

> and ever since I have a real problem with the number 50. I hope your

> daughter does not get an eating disorder because it is harder to

> recover

> than to get worse.

>

> What medicines does your daughter take? I am on Seroquel and Luvox. The

> Seroquel controls my behaviour and I have not had a bad meltdown

> since I

> was on it. I have home help staff that come on Monday, Tuesday and

> Wednesday of each week and they help with going to appointments and

> with

> chores and keeping organised. I also have a respite carer that comes

> every second Thursday to help with shopping but she irritates me

> because

> she always says " my niece is a bit like you she's got a few problems

> and

> she's a bit retarded " and suggests that I cook things out of packets

> when I already made a list of what I need and I know how to cook

> because

> I got a good grade in home economics and I learned at home for fun.

>

> I am enrolled in Computer Science at university and I got into that

> from

> a bridging course for people with disadvantages. I failed lower

> secondary school and got put in an adolescent hospital for my behaviour

> halfway in the 11th grade when I was still failing. I did alright on

> homeschool in 8th and 9th grade but my father was abusive to me and I

> ran away to my mother (who also was) and got put back in mainstream

> school.

>

> Having a family break up is difficult and really difficult for autistic

> people because we do not like change and it can be very upsetting. I

> hope things get better for you and your daughter.

>

> CZ

>

> CZ

>

> Thank you for the recent post. Sara is on Depakote for her

> seizures, Serequel for her behaviour problems and Effexor for her

> depression. She also takes a Benedryl at bedtime to help her

> sleep. (She's has trouble sleeping since she was a year old). We

> have been trying to stabalize the whole lot at the moment. I am

> hoping that her fixation on eating and calories won't turn into an

> eating disorder either. Hopefully that I am aware of this will

> allow me to help her. I try to catch people (teachers/doctors) when

> they say things that make her feel she has to " diet " , but am not

> always fast enough. She was on Risperadal for a good while and

> gained some weight on that which I know bothered her, but she has

> defintely lost all that since being on the Serequel. I am sorry

> that your childhood was filled with abuse, no one's should be, but I

> can defintely relate as mine was also, and with all forms... I have

> probably overprotected Sara from having that happen in her life, but

> I guess that is ok. Your Respite caregiver by the way...works FOR

> you and although it is hard you need to tell her that these comments

> don't help you and that when you ask for certain things at the

> store, you would like to see them in the bag. I know easier to say

> then do. People either think that because someone is Autistic that

> they don't know what they are doing or because they are highly

> verbal that they don't have any problems...People are

> interesting. ... Sara is good at Home Ec too and comes up with some

> great creations as well as a few....uh OK, you eat that one's....she

> seems to have a flair for it since she is so creative. She also

> shares a love for animals with you too. I am glad that you are

> taking a course at the University, I hope that I can continue with

> that when all settles down again. I find it very fullfilling. The

> divorce has taken it's toll on Sara (as well as myself) but we are

> better off and she has more consistency and stability now. A

> question since you know about birds, Sara has a parakeet, if we hung

> his cage in the bathroom, would the steam bother him or make him

> ill?? We live in California... Sara wants to sleep with her door

> open at the moment and I am trying to find a place in this small

> house where he won't be bothered by the cats....Well, I need to go

> to bed, a big day tomorrow at school...thanks for listening... Hope

> all is well with you.

The chemicals would be more of a problem than the steam. Some humidity

is good for them but not in excess. Perhaps you could put his cage up

high where the cats cannot get to it?

Seroquel is good with not making people get fat. Risperdal made me eat a

lot too. I refused to take medicines for a couple of years after the

last time I got put in the hospital because I hated what they did to my

brain and my body. Some of them made me into an idiot and others made

nasty physical things. Seroquel is the first one that I could take and

not have bad things happen. Same with Luvox although that did give me

Serotonin Syndrome when I was on too much of it. I have trouble sleeping

all my life but I take 200mg of the Seroquel at night and that makes me

sleep until my birdies wake me up at dawn and I take 25mg in the morning

with my Luvox.

The respite carer does not actually do the shopping for me. She is just

meant to take me to the shops and make sure I stay on track and not get

lost or have a meltdown or buy things I do not need. But instead she

just babbles about her family and basically calls me retarded which is

stupid because the first time she said it I was just telling her about a

program I wrote for computer science and then she says her niece is

retarded like me. Sometimes I wonder if she is the retarded one. I love

making up new dishes and trying to create things at home that I ate in a

restaurant. I had to do that diet with no artificial things because it

was supposed to make me less hyperactive and I started to like healthy

foods and dislike sweets and junk foods. I do like chips and sweeties

sometimes but hardly ever.

On Tuesday this week I made parathas (Indian bread things) for the first

time and I made muffins. I wanted to make jam tartlets but I was too

tired and I lost my pastry recipe.

CZ

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maggie-nice to meet you and am sorry for the reasons that brought you

here. you sound like you have a lot of courage to keep fighting the

disease and all the problems you are carrying right now. I have systemic

lupus and fibro and understand the pain of that. Take gentle care of you

and am grateful you found this group. carol

On Tue, 21 Jan 2003 23:06:31 -0000 " Maggie <grit22002@...> "

<grit22002@...> writes:

>

> To anyone who desires to read this:

>

> At Helen's suggestion I thought I would write and relay a bit about

>

> myself. I have been struggling with mainly (I guess) my

> Lymphadema/Fibromyalgia for approx. 20 years. None of the doctors

> could figure out what was wrong with me until 2 years ago. Usually

>

> it was a pat on the head or " you are too complicated " or " your

> insurance doesn't cover anything that we can do for you " ...always

> pleasant. I finally by chance found a doctor who specialized in

> Lymphadema and was supportive too boot...She did all the right tests

>

> and confirmed the severity of the disorder as well as telling me

> that

> I also had Lipadema, yea!! At least I finally had somewhat of an

> answer. No one has been able to determine what is causing me to

> loose nerve function however pretty much throughout my body. My

> hands and feet being the worse. I suspect it may be related to the

>

> recently diagnosed Diabetes and the fact that it took so long to get

>

> them to listen to me and do the tests. They felt I had Lupus for a

>

> long time (and who knows?) I have all the symptoms but the doctor

> who

> treats my Lymphadema told me that all those symptoms also relate to

>

> the Lymphadema. I have been living with the pain, very intense at

> times since I can remember. They currently have me on Celebrex

> which

> takes the edge off at least. I use meditation, relaxation therapy

> to

> help me cope and my sense of humor. Not much of me doesn't hurt but

>

> my neck and hands/arms, knees are usually the worse. My nerves fire

>

> off unexpectedly all the time which makes life interesting as

> well... I fight fatigue almost all the time and have to incorporate

>

> naps into my schedule which I find embarrasing at times. Doesn't

> help either when I have a ton of stuff to do!! I have to chose my

> projects so to speak. I also fight depression (have done this since

>

> I was 5)on a daily basis and win most of the time.

>

> About my family...I am in the process of going through a divorce

> (the

> only thing holding up completion is trying to figure out how to

> continue having health care and how I will afford that) and live

> with

> my 13 year old daughter who is high functioning Autistic/seizure

> disorder/behavioral difficulties, and my best friend who I

> ironically

> met through chats. He must love me cause he came to CA from

> VA, via Greyhound which I am sure will generate a book at some

> point! He is very supportive and trys his best to support both of

> us. We are so much alike it is scary at times!! His caring and

> support keep me going but I don't always want to burden him with all

>

> that goes on with me. My biological family all live in Florida and

>

> we try to keep in touch. I come from a very abusive background

> growing up so that comes with it's own strain. The abuse covered

> all

> areas and after years of therapy (and a couple of fantastic

> therapists!) I am a 100% better. It's nice not to be in therapy all

>

> the time!! Right now I am struggling with helping my daughter

> through a very difficult time, struggling with the school system (I

>

> have just acquired-supposedly a full time aide for her) trying to

> help her find her way through her depression and behavioral

> problems. She was in the hospital over the holidays and that was

> difficult to cope with but we did it somehow. Now I am trying to

> stabalize her so that she can go back to school and hopefully have

> some normalicy. Her Dad is not a whole lot of help, has trouble

> relating emotionally, communicating and overall with parenting. I

> am

> trying to get her to accept him for who he is and understand that

> changing is up to him. Sigh... That's sort of the short (HA!) form

>

> of it all. I joined the group because I just feel so overwhelmed at

>

> times and wonder whether I am doing the right things for her or me.

>

> It has been hard for my daughter suddenly having finances so tight,

>

> and lots and lots of changes. I just keep trying and hope I get it

>

> right somehow. For now my continuing education (Psych degree-

> research) is on hold until all stabalizes a bit...

>

> Thanks for listening (reading)

>

> Maggie

>

>

>

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Welcome to the group Maggie!! My name is Jessi and I'm 18 (19 in March). I

have severe asthma, neurocardiogenic syncope, severe GERD, a G-tube and a

whole bunch of stuff my doctors can't figure out lol. It's so frustrating

for a doctor to just brush stuff aside and ignore it, I'm sorry to hear you

went so long without doctors taking your seriously! I'm really lucky I have

a wonderful GP now! he listens and *knows* something is wrong he just can't

figure out what. I have a lot of respect for doctors that will come right

out and say " I don't know " instead of brushing it off or pretending they

know what they are doing! I hope you enjoy the group!!! How are you doing

today?! Take care k!

( *)=

{ ~~ )

Jmducky@...

-Jessi

" You are on the road to success when you realize that failure is only a

detour. " --Anonymous

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> CZ

>

> Thank you for the advice re: the parakeet, will attempt to find a

> place where the kitties can't harass him. Well as far as I am

> concerned, the respite worker should be more professional than she

> is and is totally off base. Maybe you could request some one new

> that might have more of a clue??

>

> Without a treat (in the food area-like something we are really fond

> of) once in awhile it would be hard to stick to all the good stuff,

> as I try to tell Sara it's moderation that is the key. She had a

> fairly good day back at school although she was scared. I stayed

> with her for most of the day and the Aide is very nice and well

> informed it appears. She is genuinely concerned about Sara and

> isn't about to let the " picking on " continue. It was shaky but a

> fairly good start, we shall see... Her teacher talked with the Art

> Teacher and found out that she is very receptive to Sara doing her

> own thing if she doesn't want to do the lesson (which might be quite

> involved and boring to her) and also being able to go to the library

> if she needs quiet time. I signed her up in the library for

> computer time so she can go online and she will meet her new

> teachers tomorrow. Whew.... hope it all turns out positive. Your

> Italian creation sounds yummy, wish you could email me some!! Here

> is my pastry reciepe if it helps...just incase the tartlets call to

> you to make them!!

>

> From my The New Basics cookbook by Julee Rosso & Sheila Lukins

>

> 2 1/2 cups unbleached all-purpose

> flour

>

> 1 teaspsoon salt

>

> 2 teaspoons sugar (for a sweet filling-I also add

> cinnamon/nutmeg...whatever you'd like) or if making a veggie or meat

> filling/1 tablespoon of fresh herb/oor 1-2 teaspoons of dried herbs

> or spice

>

> 8 tablespoons (1 stick) unsalted butter (or if you only have

> salted, just omit the salt above), cold cut into pieces

>

> 6 tablespoons solid vegetable shortening, cold (If you would

> rather just use all vegetable shortening and no butter then use

> about 3/4 cup of shortening-Crisco--maybe a bit more, see how it

> looks after you cut it in)

>

> 5 to 6 tablespoons ice water (sometimes you may need a wee bit

> more)

>

> Combine flour, salt, spices (if desired), sugar in a large bowl and

> cut in the butter and shortening with either a pastry blender, or a

> fork until it resembles coarse crumbs. Add water 2 tablespoons at a

> time, sprinkling around, cutting into mixture with fork. Do this

> until dough will just gather into a ball and stay together. Flour

> whatever ( a board, etc) and roll out dough. This makes enough

> dough for a 9 inch two crust pie.

>

> Pie dough will keep in the refrigerator for up to three days or in

> the freezer for 6 months. Thaw frozen dough in the refrigerator,

> then let stand at room temperature for 30 minutes before rolling out.

>

> HAPPY BAKING!!!

>

> Talk to you soon, Maggie

Maggie what is shortening? My old recipe never had that in it. Also what

is Crisco I am not sure if we get that here in Australia.

How is Sara doing at school now? I hope it is going well for her.

CZ

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CZ

Someone probably all ready answered this for you...

Crisco and Shortening are the same... Here is an ingredient encyclopedia to help everyone, even me :o)

http://www.onecook.com/reference/ing_dex.htm?specitem=Shortening

Vegetable shortening

is a solid vegetable fat sometimes used in place of, or in combination with, butter. In baked goods, it is used to "shorten" the flour-that is, to make it flaky and tender. Shortening

is solid, white fat made from hydrogenated vegetable oil.

Hope this helped :o)

Love

Helen

Maggie what is shortening? My old recipe never had that in it. Also what

is Crisco I am not sure if we get that here in Australia.

How is Sara doing at school now? I hope it is going well for her.

CZ

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**** **** **** **** **** **** **** **** ****

~~~THINK SPRING ~~~

angelbear1129@...

:o)

YOUR CROSS

  Whatever your cross

  Whatever your pain

  There will always be sunshine

  After the rain

  Perhaps you may stumble

  Perhaps even fall

  But God's always there

  To help you through it all

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  • 1 month later...
Guest guest

Hi Caroline, just a short note here....I have had a sore mouth and

throat today and did not feel like eating much. I tried the protein

chocolate fudge drink you gave me, I really like it! My mouth is too

sore to try the citrus and grape drinks today, but i will get back with

you about possibly ordering some of the protein drink. My daughter Jen

said that those drinks are becoming very popular among the nurses she

works with, they should know something about their nutritious qualities,

lol. Thanks again, Louise

C J wrote:

>

> Just for the record, I wanted you all to know I am definately

> vivatious, outrageous, gregarious, spontaneous, unexpected,

> flamboyant, and rediculously insane and sometimes a bit overwhelming.

> I can be a character if I am not careful and how much fun is careful I

> ask you? Louise's description of me was right on and I loved it. Most

> of you don't see that side of me online so I am " coming out of the

> closet " about it just so you know. I will try not to hide that part of

> me but I am much better in person when it comes to these unspoken but

> very loud and clear " virtues " . (LOL LOL LOL) I have just been so sick

> since I met everyone here that the " WOW " person sort of fades unless

> you meet me in person. Then, you just have to hang on and enjoy the

> ride because my mouth has a mind of it's own. =)

>

> Love you Louise. Thank you so very much for letting me be myself. I

> totally enjoyed meeting you, Greg, Lorie and .

>

> Smiles, Caroline

>

>

>

> (Beautiful Southern Oregon, USA)

>

> We may not be able to change the direction of the wind, but we can

> adjust our sails.

>

> May you have enough happiness to make you kind, enough trials to make

> you strong, enough sorrow to keep you human, enough hope to make you

> happy.

>

>

>

>

>

>

>

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