Thanks everyone

[Guest guest]

In a message dated 11/3/1998 1:08:33 PM Eastern Standard Time,

SCSullivan@... writes:

> Subj: [Lyme-aid] Thanks everyone

> Date: 11/3/1998 1:08:33 PM Eastern Standard Time

> From: SCSullivan@...

> Reply-to: lyme-aidonelist

> lyme-aidonelist

>

> From: SCSullivan@...

>

> Thanks to everyone for you responses to " how to deal with the boredom. "

You

> all have some great ideas, and it's nice to know I'm not the only one who

> gets

> frustrated with the limitations of Lyme. And being on this list has

already

> helped me to find a nice way to spend time!

> Thanks again,

>

>

>

I just wanted to join in thanking everyone for the great

" anti-boredom " suggestions.....even tho I have been dealing

with this horrible nightmare for 6 years now....I appreciate

new suggestions!!!! Keeps the mind working too!!!

Reading s thank you reminded me how rude I have been.

I meant to send a thank you to everyone who responded to my

plea of help in dealing with my hubby....and the strains on marriage...so many

of you responded.....especially a few guys

out there....and you really helped me gain a better perspective,

from my hubbys side of the fence......I appreciate your honesty

and compassion!!! My arthritis in my fingers and hands has been

quite painful and I was refraining from typing for a few days...

so I then forgot about the thank you. Please accept my apology!

I did read your letters and printed a few to refer to when things

get hard to bear (which I am sure is inevitable!).

God Bless you All!!!!! Thanks!!!!!!!!

Fransea

NJ Seashore

[Guest guest]

From Lisel:

And thank you . I too feel like you. The hardest part is that it

is not always consistent. So when I do feel good and do more it is

expected the next day too. Oh well...I am just getting used to this. I

guess my husband is too.

Good luck! We are not alone.

Lisel

[Guest guest]

Lisel

My family is just now getting used to it after about 4 years. my frineds

try to understand but I don't think they do quiet yet. I am thankful that

they try to understand though.

>From: <cartersq@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Thanks Everyone

>Date: Mon, 14 Jun 1999 21:32:31 +0400

>

>From: <cartersq@...>

>

>From Lisel:

>

>And thank you . I too feel like you. The hardest part is that it

>is not always consistent. So when I do feel good and do more it is

>expected the next day too. Oh well...I am just getting used to this. I

>guess my husband is too.

>

>Good luck! We are not alone.

>

>Lisel

>

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[Guest guest]

,

I wrote you last night and after a while I realized that my mail was not

going out...something wrong with computer.

Anyways the reason I wrote you is because I have a 16 yr old son who also has

AIH and PSC,Crohns and RA. He like you misses a lot of school. He goes

about 3 1/2 days a week. We have block scheduling here which means you only

have 4 periods a day but they are each 88 minutes long...So when you miss on

class it is more like 2. So you can imagine how hard it is when you're out

for days or weeks at a time. Hes in the 10th grade and wants to be in

school. Last yr he started out the year with 31/2 days a week and then was

on home bound for 7 months...His RA was so bad that he couldn't walk at

all...So this year he wants to be with his friends....Can't blame

him...Missed alot last year....The fun part of being in high school. We had

problems with some of his teachers being rather demanding in making up work

quickly so I have gone to guidance department to get him on a government

program (504 something) so by law the teachers have to provide for him...Its

for the cronically ill kids...He and I hate labels but if its going to help

him.....Its been to much pressure...

I hope your school is understanding and giving you the assistance that you

need. This is alot to deal with...just considering the tests alone...

You kids...sorry young adults..amaze me...You should be proud of yourself...

Where do you live?

I would like to talk with you and share... Hope to hear from you..

Luanne Ty's mom

[Guest guest]

Luanne

I am on the 504 plan. I don independant studies. I have had lots of

trouble with my teachers. I just told them that I didn't like it anymore

than they did and that they had to learn to deal with it. I told them that

they could not intimidate me because they were teachers (because teachers

have a tendancy to do that to kids) I told them that something had to be

done. i wanted to graduate with my class and get an education. that is my

right and they were not going to take that away. It took me three years,

and now finally my last year of high school they are doing something about

it. I still get to graduate with my class and go to prom and everything,

but it really makes me mad that they had to wait to the last minute to take

care of things. My grades have suffered because of impatient teachers, and

that is something that will be on my record when i go to college.

I understand what your son feels like to actually want to go to school.

It's not fair that we want to go to school all the time and can't and the

people who don't, can go all the time. It's little things I miss the most.

I miss hanging out with frineds at lunch time, or being a class clown. Now

I am just too tired, but i can still get in a little wise crack now and

than.

I have also learned who my real friends are and aren't. There are people

out there who do not want to understand and try to stay away, and there are

people who are afraid and there are people who really do care and don't look

at you like you are a walking germ or something.

I have learned to just live one day at a time, and have as much fun doing

it. Live is too short to worry all the time. If you are positive you will

feel much better, and if you are negative you will feel really bad. Tell

you son that when he feels alone, to talk to someone. They may not

understand what it is he is feeling, but it does help to tell people what

you are feeling so they can become aware of your feelings.

School is tough, even tougher when you feel like you have the weight of the

world on your sholders. But take one day at a time, and live life to the

fullest and you will be happy.

>From: BBNLU@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Thanks Everyone

>Date: Tue, 15 Jun 1999 19:29:17 EDT

>

>From: BBNLU@...

>

>,

>I wrote you last night and after a while I realized that my mail was not

>going out...something wrong with computer.

>Anyways the reason I wrote you is because I have a 16 yr old son who also

>has

>AIH and PSC,Crohns and RA. He like you misses a lot of school. He goes

>about 3 1/2 days a week. We have block scheduling here which means you

>only

>have 4 periods a day but they are each 88 minutes long...So when you miss

>on

>class it is more like 2. So you can imagine how hard it is when you're out

>for days or weeks at a time. Hes in the 10th grade and wants to be in

>school. Last yr he started out the year with 31/2 days a week and then was

>on home bound for 7 months...His RA was so bad that he couldn't walk at

>all...So this year he wants to be with his friends....Can't blame

>him...Missed alot last year....The fun part of being in high school. We

>had

>problems with some of his teachers being rather demanding in making up work

>quickly so I have gone to guidance department to get him on a government

>program (504 something) so by law the teachers have to provide for

>him...Its

>for the cronically ill kids...He and I hate labels but if its going to help

>him.....Its been to much pressure...

>I hope your school is understanding and giving you the assistance that you

>need. This is alot to deal with...just considering the tests alone...

>You kids...sorry young adults..amaze me...You should be proud of

>yourself...

>Where do you live?

>I would like to talk with you and share... Hope to hear from you..

>Luanne Ty's mom

>

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>Share your story with us at

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>

>1.) To subscribe send e-mail to -subscribeonelist

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[Guest guest]

-Orin-

Thanks for the new term... that's what we are... " Knowledgble

Sufferers " ... thank goodness for knowledge, I truly believe it makes

us stronger... and we will 'hopefully' suffer less )

#2

-- In @y..., orinok@a... wrote:

> I'm tremendously apreciative to all of you who made this message

board

> interesting and relative enough to keep my attention as it has led

me to

> understanding of my own condition. I recently stumbled upon the

works of Gus

> J Prosch Jr M.D. and many of his associates and have found that a

lot of the

> conclusions I have accepted through my own studies have already

been adressed

> and in cases clinicly proven. There is a silver lining on the

cloud of

> rhuematic disease.... It produces a lot of knowledgable

sufferers! Orin

>

>

>

[Guest guest]

I believe alot of people including myself feel like you in this regard.. I

remember when I first signed up with this group I felt so much relief...

Before this group, i felt like i was the only one in the world with this

disease and nobody around me even heard of it... And nobody understood..

Plus, its really hard the first few years when trying to accept this

disease..Its such a hard reality. Especially when young. Atleast we all

understand each other here and know the pain were going through.

mike

>Message: 19

> Date: Fri, 15 Mar 2002 17:08:19 EST

> From: orinok@...

>Subject: Thanks everyone

>I'm tremendously apreciative to all of you who made this message board

>interesting and relative enough to keep my attention as it has led me to

>understanding of my own condition.

[Guest guest]

Hello Sherry,

If you're having tendonitis and arthritis pain in more than 2 joints,

I myself would rather have a systemic cortizone injection rather than

localized injections. An injection directly into the shoulder would

be localized. I'm not sure what the waist injection is. Is that

systemic?

As for the SSDI and the letter to your Senator, a) try calling the

office and follow up that way, contact your State Congressman as

well. Interview the lawyer thoroughly and try and get a reduced

charge for the interview. I personally have been going with Allsup,

Inc. (http://www.allsupinc.com). For SSDI, lawyers should not charge

any upfront fee. They should only get paid once you win the case.

When you get a lawyer they should be able to get the full records

from SSDI and figure out what information has been missing from your

case in the past. It's not exactly about how disabled you are, but

rather the quality of documentation and support from your doctors.

Best wishes!

-Meghan

> Hello Everyone

>

> I want to thank all of you for holding good thoughts for me. The

people on

> this list are the best. I am feeling some better today but I am

still so

> upset at the way that doc reacted to me. I have talked to some

people and

> read about the TrP injections and I guess I will try it. Not only

do I have

> FMS/CFS/MFS; I also have OA, PA, and diabetes. All of these things

can be

> very painful and for her to believe I just have general muscle pain

is

> ridiculous. I am scared to have this done but I just need some

relief from

> this pain. She wants to inject the steroid in my left shoulder and

the left

> side of my waist area. Did anyone have something to relax them when

they had

> this done?

>

> Again I want to say how I appreciate all your suggestions and

thoughts. )

>

> As for my SS disability, I will be calling a lawyer on Monday; I

have been

> trying to get SSD for eternity (it feels). This is the fourth time

I was

> refused. So I am not giving up. To make a long story short, I moved

from Va.

> to SC, which really messed things up good. I did go before a judge

in Va.

> and his conclusion was that my symptoms were " suggestive " and some

of my

> doctors took to long to reply to him, so their opinions did not

count. I

> have a dozen letters from different doctors explaining my health

but yet I

> still keep getting refused. I had a lawyer in Va. and after the

judge denied

> me, she called and said she did not want to handle my case any

further. It

> took 22 months to go before the judge, 4 months to get the refusal

letter.

> So everything has been so time consuming. I hope this lawyer I am

going to

> call is a good one.. cause I am gonna need one.

>

> One more thing, I have written to one of the Senators in this state

and

> explained everything to him. I have not heard anything yet. I

mailed it in

> mid April so I am hoping that will help also. It was a 3 page typed

letter.

> I told him everything with dates and doctors names. I also sent him

copies

> of all those letters from the different doctors. I do have a PCP

that really

> cares and that helps. She is the way a doctor should be.

>

> Sherry in SC

> Age: 56

> " Never underestimate the power of a woman "

>

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger:

http://messenger.msn.com

[Guest guest]

Hi Tatezi, I know that when you are in a depression every little thing can

add into the depression.

I also have friends in the same situation as you, the system is still not

working well at all for them either.

I can really feel for you. I could or any one of us can be in your same

position, at just about anytime. It doesn't take much to tip the scales.

Please try to think of 3 positives for every negative thought. It helps me

sometimes.

You really are very strong, I know you will do well.

My birthdays stunk for years and years. Dwelling on these negative thoughts

get me no where. Except depressed!

I am glad you talked it out and now you felt it, now you must let it go.

Your Friend,

Donna

[Guest guest]

Hi Tatezi, I know that when you are in a depression every little thing can

add into the depression.

I also have friends in the same situation as you, the system is still not

working well at all for them either.

I can really feel for you. I could or any one of us can be in your same

position, at just about anytime. It doesn't take much to tip the scales.

Please try to think of 3 positives for every negative thought. It helps me

sometimes.

You really are very strong, I know you will do well.

My birthdays stunk for years and years. Dwelling on these negative thoughts

get me no where. Except depressed!

I am glad you talked it out and now you felt it, now you must let it go.

Your Friend,

Donna

[Guest guest]

Hi Tatezi, I know that when you are in a depression every little thing can

add into the depression.

I also have friends in the same situation as you, the system is still not

working well at all for them either.

I can really feel for you. I could or any one of us can be in your same

position, at just about anytime. It doesn't take much to tip the scales.

Please try to think of 3 positives for every negative thought. It helps me

sometimes.

You really are very strong, I know you will do well.

My birthdays stunk for years and years. Dwelling on these negative thoughts

get me no where. Except depressed!

I am glad you talked it out and now you felt it, now you must let it go.

Your Friend,

Donna

[Guest guest]

Hi Tatezi, I know that when you are in a depression every little thing can

add into the depression.

I also have friends in the same situation as you, the system is still not

working well at all for them either.

I can really feel for you. I could or any one of us can be in your same

position, at just about anytime. It doesn't take much to tip the scales.

Please try to think of 3 positives for every negative thought. It helps me

sometimes.

You really are very strong, I know you will do well.

My birthdays stunk for years and years. Dwelling on these negative thoughts

get me no where. Except depressed!

I am glad you talked it out and now you felt it, now you must let it go.

Your Friend,

Donna

[Guest guest]

Suzanne, have you ever tried to use the balance ball? I just got one

and a video " Balance Ball for Beginners " . It looks like the ball

absorbs a lot of the impact, making some of the exercises easier on the

joints. The main exercises are yoga and pilates, modified for use with

the ball. Just a thought.

Love and hugs,

Carol

[ ] Thanks everyone

You guys are amazing. I have tears in my eyes after reading your kind

words and thoughts! Thanks for your support, it means a lot to me.

(I've only just been able to scan message headers so far.)

Checked out a possible new fitness center today. It looks promising.

Not quite so convenient, but has the right stuff (heated indoor pool,

whirlpool, several outdoor pools when it gets warmer, good hours - 6 am

- 10 pm, 7 days a week) and a small room with some cardio equipment, and

a good price).

I've managed to re-center myself since my first email. The limbo is

hard. As before, my sister and I continue to have our daily " therapy

sessions " and we wait to see what happens next.

Thank you all,

Suzanne

[Guest guest]

Hi

Good for you! I'm so happy that your cousin is going to be evaluated by a

ST. How lucky they are to have you. Keep up the good work!

in NJ

kdr@...

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

I want to thank everyone for replying to my message ( " I think my

cousin might have verbal apraxia " )

I have good news: He is going to see a speech therapist today!!!

I e-mailed my mom, who is going with him to the therapist, some of

the posts from this group. Hopefully my family can see what I see

after reading those posts.

I am also going to attend his appointment today and let my concerns

be known. I will make someone listen to me!

[Guest guest]

Hi Helan,

Congradulations that the Nap pulled out of his fever flare and increased pain.He is a very lucky young man.I pray things continue like this for a very long time and there never is the love/hate dreaded steroids.With Nicks control of just an NSAID there is a good chance this could be over within the year.Very possible when the symptoms are mild in the beginning,but know one knows for sure.Think of this as something great and posative.If things do change just remember we have alot of knowledge about systemic disease and there probably is not a question you could ask that we can explain better then the rheumies.They tend to get so madical where we give day to day experiances from several parantsHugs

Becki and 4systemic

[Guest guest]

Sounds like you're on the right track. Keep us posted. We have a great interest in your progress. You make sure you get meds for that biopsy. If it's been 4 years, I have a sneaking suspicion they'll want another one. When I did mine, my dr also did a endoscopy (something like that, it was a longer word, anyway they scope down your throat to your stomach and tour around) I was on the bed waiting, the IV was attached and my dr asked me, "well, which do you want first?". I pointed to the IV. -dz-Aleah Dawn <greeneyed_timberwolfette1_1971@...> wrote:

I sure appreciate all the reply's back in regards to my liver hurting me. I sure like the fact that this group cares about everyone. We need all the support we can get with living with this darn dragon. I know I sure do and finally have started reading up on hep c again because I do plan on one day going back on tx and giving up a year to live 4-ever. Well not forever but much longer. Hopefully to see my great grand kids, hehe. I'm hoping sometime in Nov. I can get back in with my hep doctor and finding out what I need to do now since it's been 4 yrs since my last tx and didn't respond. My luck, he'll say another biopsy is neccessary. BLAHHHH. I sure will demand something for the pain before the biopsy that's for sure,lol. Well thanks again to all who had replied back. Hugs to all and Good luck to you who has started on treatment or

needs to do it again. Bless thoughs who have responded also.. Take care.. Aleah

[Guest guest]

Hi,

These tests will help. They include measurements of both blood and urine

calcium and your parathyroid hormone level will also be measured. Your vitamin D

level will also be tested. Vitamin and parathyroid hormone work together to

regulate your calcium levels. If either of these levels are off your calcium

levels will be affected. The TSH test helps measure thryoid function. Some

people

with hyperthryoidism can have elevated calcium levels so it looks like your

doctor is covering all bases. Best, Elaine

[Guest guest]

Hi

Don't be in too much of a rush to ditch your Endo. They seem to have this

rude, ugly personality. It appears to me to be part of the job description.

But if you can rise above that (and I know that's not easy), it sounds as if

your Endo is being quite thorough.

Kate

thanks everyone

> Hi, for some reason i am not getting any of the postings to this

> group so i went to the group site and saw all these great responses!

> Thanks All. When I went to the recent Endrocrin, he did take some

> tests so I am waiting to here back. He semed so abrupt and rude that

> I couldnt even think to ask him which tests he was doing. But looking

> at the receipt this is what was checked off: 1)MP (comprehensive

> Metabolic Panel), 2)Magnesium, 3)Phosphourus, 4)TSH, 5)Intact PTH-

> IRMA ( Lab), 6)1.25 Dihydroxy Vit D, 7)25 hydroxy vit D, and

> urine test for Calcium, Phosphours & Creatinine. He didnt check

> calcium but maybe that comes with the comprehensive metabolic panel?

> Anyway i have no idea what any of these mean. I appreciate your

> responses. I am going to switch endocrins as soon as i get the

> results back. Any responses appreciated!

>

>

>

>

>

>

>

>

[Guest guest]

Hi again Mia

Sorry. Should have read all posts before I posted back earlier. I

said that you could maybe get in before Tuesday. Ooops on memorial

day. Shame on me. ) Hope all goes well tomorrow and maybe Foser

can start wearing the band soon

Sandy Willow's Mom

Torticollis resolved

Cranio Germany Grad 04

> I just wanted to say thank you to all of you. You have really made

> the first couple days of this easier, I really appreciate your

kind

> words and prayers. The red shiny spot has not gone away in 6 hours

> now, so I am definitely leaving the band off for now. It's weird,

I

> couldn't think of how to explain it before, but it looks like a

burn

> almost. It's bothering me enough to leave the band off, that's for

> sure. I don't think it's a problem with sweating, we've been

wiping

> his head every hour or so, and it hasn't been very sweaty. I've

only

> had him in a onesie and we keep the house at 73 so he'll be

> comfortable. I'll call CT first thing on Tuesday. They are so

helpful

> there, hopefully it's just an adjustment. Luckily I'm in Phoenix

and

> CT isn't far away. Anyway I'll post when there's anything new.

Maybe

> for once I can be on the giving end of help instead of receiving!

> Have a wonderful holiday all!

>

> Mia

[Guest guest]

You guys hang in there!!! It takes a little time to find the right

dose and combination of medications! I'll add you both to my

prayers tonight. Marina in Ohio

--- In , " WhosDreamn " <krimoore@c...>

wrote:

> Thank you all for your advise and info regarding my post

> on " stiffness in the morning " I've been reading everything and

> stocking all that info away : ) My husband goes back to his

rhumey

> tomorrow and I'm hoping they will try him out on something that

helps

> his pain and stiffness better than the Celebrex and predisone he's

on

> now. They are helping a bit, but he still isn't comfortable yet.

> (and for him to say that, it must be hurting alot). Our crazy

> weather this week is really wrecking havoc on his joints also,

we've

> had rain, sun, thunderstorms, more sun, etc etc for the last

couple

> of days. It's making his joints really swell up, expecially his

wrist

> and ankles. I've little bit by little bit been been sharing info

> I've gotten on here, (didn't want to overwhelm him with all of it

at

> once) and he's interesting in checking out the site also : )

> hopefully this weekend we will sit down and surf the site

together.

> Again thanks everyone! Kris and

[Guest guest]

You guys hang in there!!! It takes a little time to find the right

dose and combination of medications! I'll add you both to my

prayers tonight. Marina in Ohio

> Thank you all for your advise and info regarding my post

> on " stiffness in the morning " I've been reading everything and

> stocking all that info away : ) My husband goes back to his

rhumey

> tomorrow and I'm hoping they will try him out on something that

helps

> his pain and stiffness better than the Celebrex and predisone he's

on

> now. They are helping a bit, but he still isn't comfortable yet.

> (and for him to say that, it must be hurting alot). Our crazy

> weather this week is really wrecking havoc on his joints also,

we've

> had rain, sun, thunderstorms, more sun, etc etc for the last

couple

> of days. It's making his joints really swell up, expecially his

wrist

> and ankles. I've little bit by little bit been been sharing info

> I've gotten on here, (didn't want to overwhelm him with all of it

at

> once) and he's interesting in checking out the site also : )

> hopefully this weekend we will sit down and surf the site

together.

> Again thanks everyone! Kris and

[Guest guest]

In reading Aundrea's beautiful letter and the responses, I am reminded

of all these kids go through and how it touches them. It is great that

she is able to get it out and write about it. The cards from her

classmates remind of when was hospitalized in first grade and the

kids all made him cards. He still has them, tucked away in a drawer, but

he doesn't want to part with them. Something to hold on to. Wishing

everyone a happy day, Michele (17, pauci & spondy)

Thanks Everyone

Well I am glad that I shared Aundrea's letter with all of you and

thank you for your kind words and suggestions. I think I will submit

it to the " Kids Get Arthritis too " newsletter.

You know the part that really got my heart was that her letter was so

articulate but her spelling of blode, hospitl and docturs, showed me

that she is really just my little girl dealing with a big persons

illness.

Val, Your post made me cry today about Robbie and this Thanksgiving

wish. How wonderful though to have sensitive teachers that really

care about our kids. Aundrea's class made her a get well box that

showed lots of drawings of crutches with an X thru them. It was cute.

Thanks again for all of your responses. I wish each of you a good,

and healthier day.

God Bless,

(Drea 9 systemic)

[Guest guest]

:

I hope you don't mind; I forwarded AUndrea's letter to a reporter who is

interviewing me and Rob about the Arthritis Walk this coming monday. I thought

her words conveyed the essence of growing up with arthritis and I wanted this

reporter to have another perspective.

Thank you for sharing your beautiful daughter's words with us. Take care.

and Rob 15 Spondy

[Guest guest]

Wow, that was so nice of you to give the reporter Aundrea's letter.

She will be so impressed that you thought it was good enough to pass

on.

Thanks and I hope all goes well with the Walk and your

interview.

(drea 9 systemic)

- In , " snooksmama@j... " <snooksmama@j...>

wrote:

>

> :

> I hope you don't mind; I forwarded AUndrea's letter to a reporter

who is interviewing me and Rob about the Arthritis Walk this coming

monday. I thought her words conveyed the essence of growing up with

arthritis and I wanted this reporter to have another perspective.

> Thank you for sharing your beautiful daughter's words with us. Take

care.

> and Rob 15 Spondy

[Guest guest]

,

You'll share the article with us, of course, right?

What is the angle for the article? What are they writing about now

instead of closer to the walk? Let us know and maybe we can all

duplicate some press locally. Thanks,

Stacia and Hunter 8 sytemic, iritis