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Good evening to all..

Today was the day from he--..I'm not sure which part of my body hurt the worse.

The dragon has me in a bear hug.

Work was no fun, stress..home is also stressful as of late.

Does anyone else have the problem with weight? I can't seem to loose any. I gain

really fast, then I'll loose 2 pounds and keep that off..then gain 4..

Was in the hospital first part of the week with blood pressure problems. Is that

any part of the dragon? Oh well..think I'll go to sleep and let the bones rest

for a while..

Hope all is well..don't mind me..just having a pity party..I'll be back to me

in the morning..

in NC

Hi

Sorry to hear you have this dragon called stills...hugs!! I have had my ups

and downs with it since 1972.. I am 47 now...believe this will go away..and

make good choices in your life...if you can..pick a less stressful way to

live(it

always finds us) but always..give yourself that extra break!! Liz NJ

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Dearest , I have had years of high blood pressure. Usually it was

when I was working and life was so stressful also. Then it went normal for

the last couple of years and I wish the same for you. Someone said today

here that learning to live with as little stress as possible helps a lot

with Stills. I had loss of weight for many years. Now in the past 10 I

gained a lot and don't know why. I've thought it was not working and age

changes. I hope you can rest easy this evening and do feel better tomorrow.

Many good thoughts for you, Melt

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

From: " Leppard " <smlep@...>

> Good evening to all..

> Today was the day from he--..I'm not sure which part of my body hurt the

worse. The dragon has me in a bear hug.

> Work was no fun, stress..home is also stressful as of late.

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Hi ,

This is Dave. How are you doing and feeling today? I hope your somewhat pain

free.

I've been recently put on High Blood Pressure Meds My self. Actually I just

saw my regular Primary doc. Yesturday and my pressure was 155/104. 3 weeks ago

it was 170/118. So she put me on HCTZ, (aka) Hydro-chorathyzide. Then

yesturday I was put on another new med with the HCTZ. It's a ACE inhibitor it's

called

Lisinopril.

Hopfully it will bring it down. Well I gotta split I hope your having a some

what of a PAIN FREE day. I hope you feel better.

Sincerely, Dave in South Fla.

p.s. " ONE DAY WE WILL SLAUGHTER AND PUT THE DRAGON TO SLEEP FOREVER " !!!

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Hi ,

This is Dave. How are you doing and feeling today? I hope your somewhat pain

free.

I've been recently put on High Blood Pressure Meds My self. Actually I just

saw my regular Primary doc. Yesturday and my pressure was 155/104. 3 weeks ago

it was 170/118. So she put me on HCTZ, (aka) Hydro-chorathyzide. Then

yesturday I was put on another new med with the HCTZ. It's a ACE inhibitor it's

called

Lisinopril.

Hopfully it will bring it down. Well I gotta split I hope your having a some

what of a PAIN FREE day. I hope you feel better.

Sincerely, Dave in South Fla.

p.s. " ONE DAY WE WILL SLAUGHTER AND PUT THE DRAGON TO SLEEP FOREVER " !!!

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Thanks Dave.

I too am on meds..today mine is 146/102..still too high..maybe the meds will

kick in and bring it down soon..

Have a great day..I'm having a cyper party at the lake tonight..come on over..

The weather is cool and the lake is showing her colors..

Have a great day

Re: Hi

Hi ,

This is Dave. How are you doing and feeling today? I hope your somewhat pain

free.

I've been recently put on High Blood Pressure Meds My self. Actually I just

saw my regular Primary doc. Yesturday and my pressure was 155/104. 3 weeks ago

it was 170/118. So she put me on HCTZ, (aka) Hydro-chorathyzide. Then

yesturday I was put on another new med with the HCTZ. It's a ACE inhibitor

it's called

Lisinopril.

Hopfully it will bring it down. Well I gotta split I hope your having a some

what of a PAIN FREE day. I hope you feel better.

Sincerely, Dave in South Fla.

p.s. " ONE DAY WE WILL SLAUGHTER AND PUT THE DRAGON TO SLEEP FOREVER " !!!

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Thanks Dave.

I too am on meds..today mine is 146/102..still too high..maybe the meds will

kick in and bring it down soon..

Have a great day..I'm having a cyper party at the lake tonight..come on over..

The weather is cool and the lake is showing her colors..

Have a great day

Re: Hi

Hi ,

This is Dave. How are you doing and feeling today? I hope your somewhat pain

free.

I've been recently put on High Blood Pressure Meds My self. Actually I just

saw my regular Primary doc. Yesturday and my pressure was 155/104. 3 weeks ago

it was 170/118. So she put me on HCTZ, (aka) Hydro-chorathyzide. Then

yesturday I was put on another new med with the HCTZ. It's a ACE inhibitor

it's called

Lisinopril.

Hopfully it will bring it down. Well I gotta split I hope your having a some

what of a PAIN FREE day. I hope you feel better.

Sincerely, Dave in South Fla.

p.s. " ONE DAY WE WILL SLAUGHTER AND PUT THE DRAGON TO SLEEP FOREVER " !!!

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Thats great shannon ill bring the bait,we can do little fishin in the dark.Might

get little crazy since i always forget my trunks ohh well little midnite skinny

dip sounds fun too just keep the hooks in the tackle box ehh.Take care.

d.Canada

Re: Hi

Hi ,

This is Dave. How are you doing and feeling today? I hope your somewhat pain

free.

I've been recently put on High Blood Pressure Meds My self. Actually I just

saw my regular Primary doc. Yesturday and my pressure was 155/104. 3 weeks

ago

it was 170/118. So she put me on HCTZ, (aka) Hydro-chorathyzide. Then

yesturday I was put on another new med with the HCTZ. It's a ACE inhibitor

it's called

Lisinopril.

Hopfully it will bring it down. Well I gotta split I hope your having a some

what of a PAIN FREE day. I hope you feel better.

Sincerely, Dave in South Fla.

p.s. " ONE DAY WE WILL SLAUGHTER AND PUT THE DRAGON TO SLEEP FOREVER " !!!

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Thats great shannon ill bring the bait,we can do little fishin in the dark.Might

get little crazy since i always forget my trunks ohh well little midnite skinny

dip sounds fun too just keep the hooks in the tackle box ehh.Take care.

d.Canada

Re: Hi

Hi ,

This is Dave. How are you doing and feeling today? I hope your somewhat pain

free.

I've been recently put on High Blood Pressure Meds My self. Actually I just

saw my regular Primary doc. Yesturday and my pressure was 155/104. 3 weeks

ago

it was 170/118. So she put me on HCTZ, (aka) Hydro-chorathyzide. Then

yesturday I was put on another new med with the HCTZ. It's a ACE inhibitor

it's called

Lisinopril.

Hopfully it will bring it down. Well I gotta split I hope your having a some

what of a PAIN FREE day. I hope you feel better.

Sincerely, Dave in South Fla.

p.s. " ONE DAY WE WILL SLAUGHTER AND PUT THE DRAGON TO SLEEP FOREVER " !!!

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Hi ,

You sure do have a lot to do all the time... Where do you get the energy from??? If the Dr's. are telling you Not to do PT, then who is making you do it??? Yes, it is getting cold up here too... We have the freeze warning up for tonight... It missed us last night, but they said it will get us tonight, so hubby got the garden picked and the flower pots on the porch, hoping to save them for a few more times...

Are your fingers deforming from the accident or do you have arthritis???

Take care my friend... Don't overdo

((( Pain Free Hugs )))

LOVE HELEN

Hi everyone,

Just woke up with a mild chill and turned out central heat on for the first time....we have been able to "see our breath" a bit in the mornings for about a week when we first go outside. Fall is here, at last. Even in Texas, fall and winter do come...and sometimes even with sleet, ice, and snow. That surprises many people. I know it is not the bitter cold of the east coast nor even the mid west which lasts for months on end and rips the breath right out of your lungs, but it does get uncomfortably cold.

Went to the ortho for my hand for a recheck yesterday. My wrist is healed about as he expected for this length of time. It will just never be like it was before, but hopefully more time will help. I again complained about my crooked fingers, inability to bend and flex my fingers, pronounced inflammation of my finger joints, pain in my finger joints, and lack of fine motor control in my right hand. The dr said, as did Dr. Heffez to STOP going to PT, and furthermore, that he did NOT see "any correlation between the needs of my hand and wrist and the exercises they had you doing (upper body stuff with resistance!!!)". When I described my loud neck pop followed by invisible ice water pouring down my back that night and having to be assisted to bed with a moist heating pad, his eyes bulged with concern for the injury my cervical spine almost surely suffered during those "exercises" in PT. He did wrap my digits loosely with some compression tape to help lessen the pain and inflammation, and I do also have an appt. next week to have a custom brace for my right hand made to help straighten (gradually) my fingers to a more normal configuration. He also replaced my custom tennis elbow brace which I inadvertently left in Chicago (at the Days Inn on Lakeshore Dr.) when I went to see Dr. Heffez.

I took to his Dallas cardio on Monday to have his loop recorder interrogated. As always, it was "full" of self-activated events. It showed both tachycardia and brachycardia. Not good. They even had 2 reps from Medtronic there to look at his interrogation, and they changed the perimeters to allow for more self-activated events. Obviously, more is happening than is being seen, because the recorder simply records over the data after a point. Also, Dr. Pearse wants him to have it interrogated once a month for awhile. I feel that there is a pacer/defibrillator in his future, though most of his problems seem to be in the atrium rather than the ventricle....right now. had a mild upper respiratory infection a couple of weeks ago, but took all the antibiotics, etc. which his pediatrician Rx'd. However, he continues to be extremely fatigued to the point where his teachers are having to send him to the nurse's office for periodic naps. This happens mostly in the mornings when his body is least alert and able to cope. He is getting 8-9 hrs of sleep per night, but probably needs 10-12 really. Also, the cardio wasted no time in having blood drawn to rule out the Epstein-Barr Virus (which could account for the fatigue). I don't have the results yet. Dr. Pearse also firmly said that his school class load was too intense and demanding, and wrote a note so that the school will have to have an ARD to change his schedule around some. The diagnostician at the high school "didn't know if this could be done", so, though I already knew the answer from my prior SpEd teaching experience, called Texas Education Agency and the Region VIII Educational Service Center to clarify her confusion. His ARD is Thursday.

How I do get tired of talking about health issues! On a much brighter note, the plant nursery has called to let me know that my ornamental flowering cabbage and kale have arrived for me having our flower beds redone for fall. The pansies will be here in another 2 weeks. Now..... Tell me how YOU are doing, and let's quit talking about me and my family's illnesses for a bit.....it is wearing me out to be sick and tired of being sick and tired.

Love,

~LoneStarRose~ (~~)

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  • 2 months later...

In a message dated 12/18/03 3:47:18 PM, lisa@... writes:

<< 8 weeks- slowly sucking brains from head outta my breast :)

>>

So, does that explain all the typos?? I just thought you were taking some

strong cold meds! LOL

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I didnt mean to offend anyone with this statement. In hindsight it was

probably rather a harsh and insensitive thing to say.

I am sorry.

I was thinking more of the family who are now left with the hole in

their lives. But I was just being me and saying the first thing oin my

brain.

I also realise that holidays arenot pleasant for everyone, and this just

makes it more sad, as they have inadverandtly made this worse.

I again humbly apolose if I did offend anyone

That was not my intetinon

Leis

:

> Leis:

> Just a quick blurb about the friend who " selfishly took his own

> life " . Most people who take their own lives DON'T see themselves as

> selfish,

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Leis,

I know you meant no offense by your statement. Our family has now been touched

by suicide twice in less than a year, and it is an awful situation. There is

understandable anger experienced by those left behind, and that really has to be

worked through. On the surface is DOES seem like a selfish act, it is

avoidable. But I don't think we can understand the depth of pain a person must

be in to get to that point.

Re: HI

I didnt mean to offend anyone with this statement. In hindsight it was

probably rather a harsh and insensitive thing to say.

I am sorry.

I was thinking more of the family who are now left with the hole in

their lives. But I was just being me and saying the first thing oin my

brain.

I also realise that holidays arenot pleasant for everyone, and this just

makes it more sad, as they have inadverandtly made this worse.

I again humbly apolose if I did offend anyone

That was not my intetinon

Leis

:

> Leis:

> Just a quick blurb about the friend who " selfishly took his own

> life " . Most people who take their own lives DON'T see themselves as

> selfish,

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  • 2 weeks later...

,

Oh Oliva's 6.. that's sooo cute! I can't even amagine Zane being six.

I can't even think about him being one. but he's scooting along on

the floor now and up on all fours launching himself forwards...

growing up quickly (more of a reason to have a cast now on him). I am

sending out the informaiton to the shriners in tampa the one that he

has an appointment with in mid-january.. i am sending that info out

in tomorrows mail! in hopes doc will read and see us sooner.

Crista,

I know exactly what you mean and how you feel about everyone thinking

you are the drama queen of the family (even my husband thinks that of

me). As if it isn't bad enough being 18 and a mom in my family- god

forbid you have an opinion & some intuition. Don't they make you feel

so stupid eventhough you know you are right? That is my problem a

lot... sometimes I let people make me feel substandard to them

because of my age. I mean really, what is wrong with DEMANDING proper

care for your child! Thats not being a drama queen that's being a

damn good mother! That's okay because when everything comes out " in

the open " eventually as we get word out with a cure for Idio. Inf.

Scol. all the people who doubted us, or laughed at us, or thought we

were extreamists and crazy can kiss where the sun don't shine.

My father is a family practitioner, and uncle is a respected

professor at nova southeastern university of obstopathic medicine in

miami, fl.. my whole family is pretty well informed and up to date

with medicine ... and still they think I am over-reacting about Zanes

situation/condition. I swear, sometimes I feel I am the only one who

has Instinct enough to know when something is wrong.

See, pretty much all U.S doc's are taught the same things, they're

taught the same ways to practice medicine and If they are all taught

the same " wrong " way (sorry people but when it comes to idiopathic

infantile scoliosis they have been taught incorrectly) then all of

the doc's form the same wrong opinions and conclusions of how to

treat the medical problem. When is life going to be just? LOL. And

what really seems obtuse is if " science makes medicine " and

scientists jobs are to research! Then why in the hell haven't they

researched a condition that has been around since the beginning of

man? For goodness sakes you'd think they would have mastered that by

now and moved on to something new. SoRrY! Casting an infant, to me

seems like common sense not rocket science.

Aww! That is so cute your son wants you to dance with him... hehe he

sounds like a real sweet<3!

Hey Crista, if you could... would you e mail me your home

address?!? AmberNay917@...

I'd like to send you some pictures and I want to know what you look

like.. I know it sounds like I am a weirdo, but have you ever heard

someones voice and known someone who sounds like them?!? I just

picture you looking like a close friend of mine. (And it is kinda

uncanny how nick and zane look alike too)... well anyways i am

blabbing again and again! Like usual!

- how did your appointment go? i am on the edge of my seat

here! little nate has a birthday coming up soon too, right?

Oh, yeah... During the 20 hour drive (vacation ya right lol) i wrote

a poem about Zane I'll put it on here if you gals want me to?????

It's just that I am so darn proud of it! hehe =)

So ya, now that I am done with my novel of a letter...

I am off to dream land, my " sane from teething-zane " place!

night y'all

~Amber~

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Amber and Crista,

Hello!

Amber, lets send a few more of Zane's packets to docs throughout the u.s.

If the Shriners in Tampa is not open to the idea of casting, I want to have more bases covered( just in case).

Can you call me at home today? I can call you, but I fear my long distance phone bill is going to be crazy this month, so I am trying to have the moms that can, just call me.

And I love poetry..............especially when its to do with a mother and child...Add it to C.A.S.T., and I will search for the poetry I have collected over the years and do the same.(it may take me a while)

Crista,

Maybe we can talk again, too..Now that the holidays are over....I have some more great ideas!

Oh, and about docs/family members not understanding....Tell me about it!! In actually had a member of my family (lawyer) tell me to stop being a rebel for once in my life and take my daughter to the doctors and DO WHAT THEY #$%@*% SAY!!!!!!!!

Talk about family support, eh? ha- ha- ha

Hang in there ladies, and lets talk today if possible...Time to catch up

great to hear from you both,

talk soon,

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Hey and Amber,

Amber, I will email you my address privately. What is the email you want it to go to? Also..I will have my husband send a bunch of pictures over the computer tomorrow.

...I will call you tomorrow. My best friend is driving from Santa Barbara right now to come and visit. She is 21 weeks pregnant with twin boys. You know I will be looking at those backs when those babies come!! LOL

oh the card I sent with the check came back!!! I will resend it and verify the address when we chat. It said "no such number" hmmm

Have a good weekend and Amber I really need to chat with you also!!

bye guys!

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Oh, one last thing..

My husband said the funniest thing yesterday!

He called you guys my "Internet Friends in Scoliosis Land!"

I cracked up! I don't know why that sounds so funny to me. Just thought I would share that.

Bye,

Crista

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  • 3 weeks later...

Marta, that is WONDERFUL. Or as Mr. Burns from the " Simpsons " would say,

" excellent! " - I must say, I haven't been in the 120s since the first

trimester in my mom's womb. LOL

Jim

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

From: Marta S. [mailto:mjs93311@...]

I made it to the 120's, I know you will like to hear that

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> Marta, that is WONDERFUL. Or as Mr. Burns from the " Simpsons "

would say,

> " excellent! " - I must say, I haven't been in the 120s since the

first

> trimester in my mom's womb. LOL

>

>

>

> Jim

Snorting coffee! If you were coming to the meeting, I would give

you a special showing!

marta

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In a message dated 1/13/2004 7:00:43 AM Pacific Standard Time,

mjs93311@... writes:

> I made it to the 120's, I know you will like to hear that! I guess

> I am a size six. My weight is not my primary concern these days, I

> am glad to say.

Which of those sentences is the best???? Congratulations, Marta -- what a

perfect example to us all and I am thrilled you have made the 120s -- you

LITTLE, PETITE, TINY, BITTY powerhouse, you!

Hugs and blessings, Ann

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In a message dated 1/13/2004 7:00:43 AM Pacific Standard Time,

mjs93311@... writes:

> I made it to the 120's, I know you will like to hear that! I guess

> I am a size six. My weight is not my primary concern these days, I

> am glad to say.

Which of those sentences is the best???? Congratulations, Marta -- what a

perfect example to us all and I am thrilled you have made the 120s -- you

LITTLE, PETITE, TINY, BITTY powerhouse, you!

Hugs and blessings, Ann

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Hummmmmmmmmm ... a special showing from Marta AND Kinsey. That is so dang

tempting... :-) Folks, someone rescue me - I don't want to do today. I

want to crawl back in bed and sleep the day away. I'm such a sloth! :-(

_____

* From: Marta S. [mailto:mjs93311@...]

Snorting coffee! If you were coming to the meeting, I would give

you a special showing!

Marta

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> Marta wrote: I made it to the 120's, I know you will like to hear

that! I guess

> I am a size six.

Marta,

Holy moly! I can't imagine what it must feel like!! Congratulations

again and again! A size SIX!!! Wooohooooo!!!

I'm hoping that after my revision, I might be able to get below 200.

My ideal weight according to " the charts " is 164. At 180 (in 1986

when I was severely hyperthyroid with a free T4 test of 36), I looked

gaunt and sickly. Of course, I had a panni that probably weighed 15-

20 lbs...so maybe the rest of me was underweight. I would never want

to be under 180 WITH my panni. Ok...I'm rambling...going now...

Hugs,

Laurie

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In a message dated 1/13/2004 4:33:03 PM Pacific Standard Time,

sujerlam@... writes:

> her to get out her " Yellow Polka Dot Bikini " , otherwise

> you got most of the words right. LOL

Dang -- forgot to say that! Thanks for adding it, Jerry (break out that

bikini, Marta)!

Hugs and blessings,

Ann

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