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Welcome Wolfgang!

Nice to have you on our list! What type of help do you think you are in need of right now? Any specific problems you are facing that led you to the list?

All My Best,

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All of the (few) cases of asperger's I've seen proper diagnostic

testing on were arsenic toxic, not mercury toxic.

Arsenic responds very well to chelation with ALA.

Andy

> Most of us have children, relatives, or friends with autism or

Asperger's and believe mercury or other heavy metals from vaccines and

other sources caused or contributed to the autism or Asperger's. Some

of us have had mercury poisoning ourselves from dental fillings or

other sources.

> S

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

> Hello Group

>

> My Name is Wolfgang i come from Germany an i am 27 Years i Have

Asperger Syndrom .

>

> I hope i can find Help in this Group

>

> Sorry my writing in English is not so good reading is not a Problem

>

> Wolfgang

>

>

>

>

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  • 3 weeks later...

Helo MW.. A not uncommon confusion in terms. Apraxia and dyspraxia are often

used interchangeably. Many make the distinction between apraxia as an acquired

disorder (post stroke, post trauma..) and dyspraxia as a developmental disorder.

Barbara

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  • 3 weeks later...
Guest guest

Fly,

It is great to see you posting again. We have missed you. Your husband is a

sweetie - not weird, just unique.

Pat

At 09:29 PM 03/17/2001 -0500, you wrote:

>This is Fly, here. Many of you may remember me and to you, " Hello again " .

>To others who don't know me, " Glad to meet you " .

>I have FM, OA in many areas, moderate to severe Osteoporosis, (depending

>on which area) carpal tunnel, migraines, and RA or PA, I don't know yet,

>and psoriasis.

>I was diagnosed with FM 13 years ago. It is all but impossible to figure

>out what triggered the FM. Too many things to list, but all things that

>can make the problems worse.

>Then about 3 years ago, I was diagnosed with RA. BUT, within the last

>several months, my Rheume and other doctors think that I may actually have

>psoriatic arthritis. Which ever it is, it is an inflammatory arthritis and

>I don't like it. :)

>I am on Fosamax 10mg, Miacalcin nasal spray in the AM, Prevacid 30mg,

>Azulfidine 500mg bid, Naproxyn 500mg bid, and Trazadone 50mg at night.

>As most of us, I have my good days and my bad. Lately, too many bad,

>though. The fog is really thick around here.

>I am still working. I teach and do Braille and adaptations on the

>elementary level. I tutor adult non-readers and am active board member

>(when I can be) with PA Cleanways, a recycling and environmental awareness

>here in Pennsylvania. I use to do other things in the evenings and

>weekends, but have had to cut some of them out recently because of fatigue.

>I am married to a really weird, but wonderful guy and I have 2 daughters.

>One who lives in Chicago and the other who lives with us, after living

>away for 8 years.

>I am (I just wrote 27, how I wish) ... I am 47 and find wonderful comfort

>in our 4 dogs and our cat. Thank goodness for critters!

>I don't talk too much, but when I do, I tend to go into detail. I will try

>to control that. I have several wonderful friends on this list that have

>seen me though some emotional times. I am happy to be back.

>Fly

>

>

>

>

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Guest guest

Hi Fly! It's nice to have you back again. There's several of us that don't

have a diagnoses yet. How are your fingernails doing? Do you have the

" sausage digits? " Sometimes I think my diagnosis is not right because I don't

have nail involvement and have so little psoriasis, but after reading the

psoriasis group, there are some there that have no psoriasis at all. It

baffles me how they diagnose psoriatic arthritis with no psoriasis. At least I

DO have psoriasis in my family including both of my children and an aunt.

I remember my brother getting patches on his wrists when we were young.

Sorry the fog has been so thick Fly. I know how that goes. Fibro fog is the

pits. I hope your good days start to outnumber the bad. Summer is coming, and

hopefully the nice weather will help you feel better.

a

P.S. Your husband is a very sweet guy!

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

From: fly

Sent: Saturday, March 17, 2001 9:29 PM

Subject: [ ] hello

This is Fly, here. Many of you may remember me and to you, " Hello again " . To

others who don't know me, " Glad to meet you " .

I have FM, OA in many areas, moderate to severe Osteoporosis, (depending on

which area) carpal tunnel, migraines, and RA or PA, I don't know yet, and

psoriasis.

I was diagnosed with FM 13 years ago. It is all but impossible to figure out

what triggered the FM. Too many things to list, but all things that can make the

problems worse.

Then about 3 years ago, I was diagnosed with RA. BUT, within the last several

months, my Rheume and other doctors think that I may actually have psoriatic

arthritis. Which ever it is, it is an inflammatory arthritis and I don't like

it. :)

I am on Fosamax 10mg, Miacalcin nasal spray in the AM, Prevacid 30mg,

Azulfidine 500mg bid, Naproxyn 500mg bid, and Trazadone 50mg at night.

As most of us, I have my good days and my bad. Lately, too many bad, though.

The fog is really thick around here.

I am still working. I teach and do Braille and adaptations on the elementary

level. I tutor adult non-readers and am active board member (when I can be) with

PA Cleanways, a recycling and environmental awareness here in Pennsylvania. I

use to do other things in the evenings and weekends, but have had to cut some of

them out recently because of fatigue.

I am married to a really weird, but wonderful guy and I have 2 daughters. One

who lives in Chicago and the other who lives with us, after living away for 8

years.

I am (I just wrote 27, how I wish) ... I am 47 and find wonderful comfort in

our 4 dogs and our cat. Thank goodness for critters!

I don't talk too much, but when I do, I tend to go into detail. I will try to

control that. I have several wonderful friends on this list that have seen me

though some emotional times. I am happy to be back.

Fly

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  • 1 month later...
Guest guest

Marie,

Sorry your ribs have been bothering you so much. It must be very difficult

to work at all.

Has the pleurisy subsided?

Best of luck at your appointment on Friday. I hope that you and your doctor

can come up with a better treatment plan.

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

From: " M. Bowen " <bowens@...>

" Ra-Support " < >

Sent: Tuesday, April 17, 2001 7:01 PM

Subject: [ ] Hello

> I need to apologize for not being online more. This past Friday was my

one

> year anniversary and we were going to party, even have canbanna boys. I

was

> looking forward to that party. I so wiped out Friday when I got home I

just

> took 2 pain pills and crashed.

>

> As some of you know I have RA and costochondritis. Both have been

> acting up (in a flare) these past 3 weeks. My arthritis Dr. put me on

a

> combination of predisone and plaquenil to bring the inflammation in the

> joints down. Daily I'm taking 10-12 pills a day, not including pain

> medication. The pred/plaq combo is working great for the aches/pains of

the

> joints. However my ribs (the costo stuff) are still very painful. If I

> sneeze, cough or even laugh the pain is so bad I can't help but cry.

>

> I haven't worked a full day in over 3 weeks. The few half days I've

worked

> have totally worn me out.

>

> I see my arthritis Dr. Friday. I'm hoping for a different arthritis

> medication to help my ribs. The vioxx helps the jonts, but not the ribs.

>

> The kids have been great by helping out around the house. I appreciate

> their help, but they are still just kids. I need to get back to being a

> mommy again.

>

> Marie

> AKA TwinMom

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Guest guest

I'm glad you left this message from Marie attached . I never got this

one! I hope isn't burping again. I haven't had problems that I

know of, but how do we really know?

Marie that rib pain is so debilitating. I've only had a few episodes of

rib pain, but it was so painful and was aggravated by every move. I can

imagine after 3 weeks of this, you are really worn out. Have you tried

warm compresses? Has the doctor discussed injecting the ribs with

cortisone?

I hope you feel better soon.

hugs,

a

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

From: " Matsumura " <Matsumura_Clan@...>

" RA-Support " <RA-Support >

Sent: Friday, April 20, 2001 11:16 PM

Subject: Re: [ ] Hello

> Marie,

>

> Sorry your ribs have been bothering you so much. It must be very difficult

> to work at all.

>

> Has the pleurisy subsided?

>

> Best of luck at your appointment on Friday. I hope that you and your

doctor

> can come up with a better treatment plan.

>

>

>

> ----- Original Message -----

> From: " M. Bowen " <bowens@...>

> " Ra-Support " < >

> Sent: Tuesday, April 17, 2001 7:01 PM

> Subject: [ ] Hello

>

>

> > I need to apologize for not being online more. This past Friday was my

> one

> > year anniversary and we were going to party, even have canbanna boys. I

> was

> > looking forward to that party. I so wiped out Friday when I got home I

> just

> > took 2 pain pills and crashed.

> >

> > As some of you know I have RA and costochondritis. Both have been

> > acting up (in a flare) these past 3 weeks. My arthritis Dr. put me on

> a

> > combination of predisone and plaquenil to bring the inflammation in the

> > joints down. Daily I'm taking 10-12 pills a day, not including pain

> > medication. The pred/plaq combo is working great for the aches/pains of

> the

> > joints. However my ribs (the costo stuff) are still very painful. If I

> > sneeze, cough or even laugh the pain is so bad I can't help but cry.

> >

> > I haven't worked a full day in over 3 weeks. The few half days I've

> worked

> > have totally worn me out.

> >

> > I see my arthritis Dr. Friday. I'm hoping for a different arthritis

> > medication to help my ribs. The vioxx helps the jonts, but not the

ribs.

> >

> > The kids have been great by helping out around the house. I appreciate

> > their help, but they are still just kids. I need to get back to being a

> > mommy again.

> >

> > Marie

> > AKA TwinMom

>

>

>

>

>

>

>

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  • 3 weeks later...
Guest guest

Yes it's very close to me, I'm at ten mile just east of woodward. How old is

Kailee? Chloe is 2.7. We should hook up sometime.

Nicky

--- gallagher@... wrote:

> Hi nicky,

> We live in Rochester Hills between Auburn Rd. and Dequindre.

> Kailee is going to speech on 12 mile and Woodward on Mondays and

> Fridays is this close to you. Love to talk to you

> Amy Gallagher

>

>

>

>

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  • 2 months later...
Guest guest

Hi Stasia! Thanx for popping in! Sounds like is doing great!

Kendra in Canadafor information on positional plagiocephaly, visitwww.plagiocephaly.org/support..

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

From:

Plagiocephaly

Sent: Wednesday, July 18, 2001 9:47 PM

Subject: Hello

Hi All!I haven't posted in quite some time, but I wanted to let you know that we are doing just fine. is rounding out nicely. We even met another person in our area who has a son the same age and is seeing the same orthodist. The orthodist recommended that we see our Neurosurgeon for a check up and said that it should only be a few more months for his helmet. I can't believe how quickly the time has gone by. now has two bottom teeth, is crawling very quickly and is climbing up on everything...I don't know if I want this helmet to come off because it sure has saved his little head from a lot of bumps!Well, I just wanted to say hello and let you know that we are still alive here!Talk to you all soon.StasiaMom to 9 months - STARband - 03/01 - PA/DEFor more plagio info

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Guest guest

Stasia,

Thanks for the update. Glad to hear that things are going well for

and that his head is rounding nicely. Before you know it you will

be posting the " graduated " message!! had some good bumps

when she finished with her helmet because she was not used to being cautious.

After the first few times she learned pretty quickly!!!

Let us know how it goes with the nuero!

Marci (Mom to )

Oklahoma

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  • 2 weeks later...
Guest guest

Hi Trisha,

Wow this is so ironic. I just moved from Southern California to Las

Vegas last month. However, I am still going every three weeks to see

at Cranial Therapies in Burbank. I usually stay with my mom

for about a week when I go down there so if you want to get together

when I go for Tommy's adjustments that would be cool. I can't

believe I am WAITING for someone from CA to join the group and nobody

joins until I move. I would have loved to have had someone to talk

to while I was there.

Jill Ramos, Las Vegas,NV, formerly of Ventura, CA.,mom to Tommy and

Gavin, 8mos.

P.S. I will be staying in Santa Clarita. Is that close to you?

> Hi my name is Trisha Wood and I belong to another Plagio Support

> Group. I was just wondering if there were any moms out there

living

> in Southern California and using the CT in Burbank? I would love

to

> find someone living close to me to chat and maybe start a

Plagio/Tort

> group in So. California. Thanks - Trisha (Mom to Ava, CA.)

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Guest guest

Hi:

Talk about ironic, I just posted a question to see if there are any

Californians out there. My name is and I line in CHico

(Northern CA) I talked with in Burbank on Friday. He sounded

like he knew what he was doing. He said that all of our visits can be

made in one day (no overnights) Has this been the case with you?

Glad to hear from people on the west coast!!

, mom to Adrienne (4 months)

> > Hi my name is Trisha Wood and I belong to another Plagio Support

> > Group. I was just wondering if there were any moms out there

> living

> > in Southern California and using the CT in Burbank? I would love

> to

> > find someone living close to me to chat and maybe start a

> Plagio/Tort

> > group in So. California. Thanks - Trisha (Mom to Ava, CA.)

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Guest guest

Hi ,

It's about TIME we got some people in CA! I have been a member for

about 2 months or so. is a pretty cool guy but he does have a

big ego. I will say this, though: My son never had any red spots or

sores on his head from his band. From day one, we were able to keep

it on all day (well except for the first couple of days...he would

wear it for a little while, then get pissy-but that stopped pretty

quickly). He doesn't even notice it when I pop it on his head now.

My son is notoriously shy around strangers, but he REALLY liked

. And the casting went very smoothly there, too.

Wouldn't it be nice if we could all schedule our appts. for the same

day? Their latest appt. is 11:30AM, that is probably why said

you could get it done in one day. The airport is only about 10 min.

from there.

Well, I've blabbed long enough. Chat night is on Tues., hope to

maybe talk to you guys then!

Jill Ramos, Las Vegas, CA

> > > Hi my name is Trisha Wood and I belong to another Plagio

Support

> > > Group. I was just wondering if there were any moms out there

> > living

> > > in Southern California and using the CT in Burbank? I would

love

> > to

> > > find someone living close to me to chat and maybe start a

> > Plagio/Tort

> > > group in So. California. Thanks - Trisha (Mom to Ava, CA.)

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  • 4 weeks later...

Hi,

I am 28 yo male and live in Brisbane Australia, and I have BPES

(Blepharophimosis Ptosis Epicanthus Invertus Syndrome). I was the

first in my family to exhibit the condition. I have two children, a

boy () and a girl (Zoe) and they both have it, although Sam's

was less pronounced than mine and Zoe less again.

I experienced the taunting from peers who do not accept someone who

is different. To me this was the most difficult part of this

condition. I feel very hurt when my children still experience the

same thing.

I had an number of operations as a child and was generally

disappointed with the results. I am faced with issue of operations

for my children. Do I subject them to the risk and discomfort of the

operation for the sake of ignorant people and how successful will the

operation be? They are happy and healthy children and only know

about their condition through thoughtless people around them.

Thats my experience. Good luck with your journey through life.

Craig

> Hi everyone!!

>

> I know this is a small group, but i would like to know some more

> background information of the families that have blepharophimosis.

> Unfortunately, my family has been very " hush hush " about this,

every

> since i was a little girl. I'm not sure if it was because they did

> not have information, or they were embarassed by this.

>

> About a year ago, at the age of 21, i had two plastic surgeries to

> correct the opening of the inner eye (bleparophimosis) and to

correct

> the ptosis, which i guess is characterized by not having the muscle

> to pull the eyelid up.

>

> My great grandfather was the first person to be born with " smaller

> eyes " , and since then the gene has been passed along to my

> grandfather, who has passed it to my dad. My grandfathers sister

> also had bleph, my two aunts have bleph, and my two brothers have

> bleph. Im not sure if my grandfathers sister had any " small eye

> children " , however my aunts have adopted children. Im not sure if

> they adopted because of fertility problems, or what. Apparently,

you

> are not supposed to ask questions that make people uneasy or upset.

> However, one of my aunts did get pregnant and have a misscarriage

at

> five months into the pregnancy.

>

> I, myself do not have fertility problems, however i havent tried to

> become pregnant. I am not married, but i dont think, i would like

to

> pass my bleph genes to my own children. I have been raised in New

> York, but i have felt the nasty rumors, remarks, etc that have been

> put in my face, that is not normally expected of open minded " New

> Yorkers " Even though i was born in New York, i have been mostly

> raised in the Persian (Iranian) Jewish neighborhoods. This is not

> an easy task, considering that they deemed me to be " chinese,

> japanese, or from the philipines. " For those that are unfamiliar

> with iranians, it is very rare to find a chinese or japanese person

> in iran!!. It is also very difficult to find a chinese person who

is

> jewish, so needless to say, whereever i went, i was like a sore

thumb.

>

>

> The strange thing is, that since both of the surgeries, numerous

> people have come up to me, and asked " Have you lost weight, you

look

> gorgeous!!! " " (a side note, I am overweight for my height, so this

> doesnt help matters either!)

>

> Anyways, i would just like to know more information, regarding

family

> members, and experiances with bleph. If there are any coping

> mechanisms, that have been helpful, please do not hesitate to

mention

> them as well.

>

>

> Thank You,

>

> Dalia

>

>

> By the way, the doctor that has performed the two surgeries, is Dr

> Albert Hornblass. I dont have his number handy, but his office is

in

> New York, New York, on 67th st and lexington.

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  • 3 weeks later...

Welcome . You will get MUCH support here. I know because I recently

joined and I have had much support.

Hugs,

colleen

Check out my website at: http://www.geocities.com/callyanne21/

>From: khicks81@...

>Reply-

>

>Subject: [ ] Hello

>Date: Tue, 11 Sep 2001 14:32:45 -0000

>

>Hello all,

>My name is . I have OA of the spine and just found out I tested

>positive for RA. I am looking for and hope to return support with

>people with the same problems. i am married and have 2 girls ages

>5 & 2.

>Sincerely,

>

>

>

_________________________________________________________________

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A warm welcome to our group, !

Sorry about your RA and OA, but you have come to the right place. We would

very much like to try to get to know you and support you and would welcome

any contributions you could make as well.

Glad you found us and I am looking forward to hearing more from you.

[ ] Hello

> Hello all,

> My name is . I have OA of the spine and just found out I tested

> positive for RA. I am looking for and hope to return support with

> people with the same problems. i am married and have 2 girls ages

> 5 & 2.

> Sincerely,

>

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Hi ,

Glad to have you here. I know you will like it here and you will get alot of

support. Great days ahead.

Kathy in Fla.

Colleen <colleen_donald@...> wrote: Welcome . You will get

MUCH support here. I know because I recently

joined and I have had much support.

Hugs,

colleen

Check out my website at: http://www.geocities.com/callyanne21/

>From: khicks81@...

>Reply-

>

>Subject: [ ] Hello

>Date: Tue, 11 Sep 2001 14:32:45 -0000

>

>Hello all,

>My name is . I have OA of the spine and just found out I tested

>positive for RA. I am looking for and hope to return support with

>people with the same problems. i am married and have 2 girls ages

>5 & 2.

>Sincerely,

>

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

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Lynn

It is so nice to see you posting. I know this means that you're on the road

to recovery. I hope you

are able to eat again now that this is behind you. Ensure must get old

after awhile. Did your doctors

say how long you have to go without your RA meds? I hope not to long.

Getting drainage tubes out was

never my favorite part, but the only good thing about it is that it means

you are recovering.

I'm sending healing thoughts and prayers your way.

hugs,

a

[ ] hello

Hi Guys,

First I want to thank everyone for all their prayers. It is all the

prayers that has gotten through this.

Right now the RA is the worst of the pain. I am still slow and not

able

to eat much but getting better. I was a little shocked when I got weighed

and lost another 15 pounds. However, that isn't bad considering all they

took out.

I still have the staples and 5 drainage tubes, not looking forward to

them

coming out. That should be on Thursday.

I just wanted to say hello.

, I have been trying to call you but I think I took your

number down

wrong. I will continue to try.

Lynn Me Mom

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Hi a,

I am sorry for not getting back to you. How is feeling? I hope

everything went well.

I had a little set back. I went to the drs. and he removed the staples

and four of the five drains. On the ride home I started to have a lot of

pain from my ribs which is were the drains went. I had to call the

hospital at 2 am the pain was so bad. They told me it is normal that when

they pulled the drains out they traumatised everything. So for the next

few days it is going to hurt. They told me to take the tylenol and

codeine. I just wished they had told me about this at the drs. office.

Good news all the test are back and there is no cancer.

I will catch up with everything here soon, I hope.

Lynn MeMom

----------

> From: a <paula54@...>

>

> Subject: RE: [ ] hello

> Date: Tuesday, September 18, 2001 9:41 PM

>

> Lynn

> It is so nice to see you posting. I know this means that you're on the

road

> to recovery. I hope you

> are able to eat again now that this is behind you. Ensure must get old

> after awhile. Did your doctors

> say how long you have to go without your RA meds? I hope not to long.

> Getting drainage tubes out was

> never my favorite part, but the only good thing about it is that it means

> you are recovering.

> I'm sending healing thoughts and prayers your way.

> hugs,

> a

>

>

> [ ] hello

>

>

> Hi Guys,

> First I want to thank everyone for all their prayers. It is all

the

> prayers that has gotten through this.

> Right now the RA is the worst of the pain. I am still slow and not

> able

> to eat much but getting better. I was a little shocked when I got

weighed

> and lost another 15 pounds. However, that isn't bad considering all they

> took out.

> I still have the staples and 5 drainage tubes, not looking forward

to

> them

> coming out. That should be on Thursday.

> I just wanted to say hello.

> , I have been trying to call you but I think I took your

> number down

> wrong. I will continue to try.

> Lynn Me Mom

>

>

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Lynn,

Now I have to apologize to you. I thought I answered this, but I never saw

it so it's

either lost or fibrofog strikes again!

How are you feeling? Have you recuperated from them removing the drains?

I'm so happy

that you're officially cancer free.

is feeling fantastic. He is 100% pain free. Thanks for asking. He

may have to have

another injection, but that's fine with him!

I hope you're pain free and eating better.

Hugs,

a

Re: [ ] hello

Hi a,

I am sorry for not getting back to you. How is feeling? I hope

everything went well.

I had a little set back. I went to the drs. and he removed the

staples

and four of the five drains. On the ride home I started to have a lot of

pain from my ribs which is were the drains went. I had to call the

hospital at 2 am the pain was so bad. They told me it is normal that when

they pulled the drains out they traumatised everything. So for the next

few days it is going to hurt. They told me to take the tylenol and

codeine. I just wished they had told me about this at the drs. office.

Good news all the test are back and there is no cancer.

I will catch up with everything here soon, I hope.

Lynn MeMom

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Hi a,

You don't need apologize to me, we all get busy. I am glad to read that

is okay. I haven't been able to ask my son Rick about the drug. He

has been sick and when Rick get sick he is really down for the count. It

always took him longer to get well when he was a child.

How are you feeling? I know you were a little down when we spoke, I hope

you are better. September 11 has shocked everyone of us. Those pictures

you sent are beautiful. I am sending them to my friends. I know a doctor

who is very religious and he will appreciate them.

Eating is a pain in the butt. I wish I had thougt to talk to a dietician

when I was in the hospital. I don't get real hungry and when I do I have

to think what to eat. Maybe things will get better when the drain is out

next Thursday. It took five days for the pain to go away from the other

drain removal, hope it doesn't happen this time.

I hope today finds you well.

Lynn MeMom

----------

> From: a <paula54@...>

>

> Subject: RE: [ ] hello

> Date: Wednesday, September 26, 2001 9:20 PM

>

> Lynn,

> Now I have to apologize to you. I thought I answered this, but I never

saw

> it so it's

> either lost or fibrofog strikes again!

> How are you feeling? Have you recuperated from them removing the drains?

> I'm so happy

> that you're officially cancer free.

> is feeling fantastic. He is 100% pain free. Thanks for asking. He

> may have to have

> another injection, but that's fine with him!

> I hope you're pain free and eating better.

> Hugs,

> a

>

> Re: [ ] hello

>

>

> Hi a,

> I am sorry for not getting back to you. How is feeling? I

hope

> everything went well.

> I had a little set back. I went to the drs. and he removed the

> staples

> and four of the five drains. On the ride home I started to have a lot of

> pain from my ribs which is were the drains went. I had to call the

> hospital at 2 am the pain was so bad. They told me it is normal that

when

> they pulled the drains out they traumatised everything. So for the next

> few days it is going to hurt. They told me to take the tylenol and

> codeine. I just wished they had told me about this at the drs. office.

> Good news all the test are back and there is no cancer.

> I will catch up with everything here soon, I hope.

> Lynn MeMom

>

>

>

>

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