Kathy

[Guest guest]

In a message dated 7/18/2002 1:06:03 AM Eastern Daylight Time,

outerspace@... writes:

> Boy. . . do you have some rough days.

> Sometimes I wish I was Bewitched and wish people and days out of sight!!!!

Hi Kathy,

Yes, lately all my days have been rough! I decided we needed a break and took

Zeb to Cape Cod in our 5th wheel. We were combining business and pleasure at

a fair. We left thurday and returned this evening. I couldn't get home fast

enough. He was a bear!!! He loved the rides though. Happy to be back. People

can be very fast to judge if they haven't walked the walk.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Hi girl: Glad it is working and you didn't wait all that time on the TT

for nothing. I am waiting for some cash. May have to wait until after the

first of the year.

I just returned home from family reunion and everyone was very complimentary

on my weight loss but I feel it doesn't show much because of my flab. I wear

bathing suit with a skirt and if that is what I have to continue doing I will

do so but would like to have the arms and tummy done. Bat wings are the

worse thing for me. I feel like they show no matter what I wear. I made a

joke of it at the reunion and offered to be the entertainment for the program

and play a tune with my wings. If crickets can do it so can I.

You are close to 21 months out, aren't you? When was your last loss or are

you still loosing? I thought I was thru but lost while on the family

reunion. Don't know how thought I was stuffing myself. Usually I gain while

traveling but this time lost 3 pounds. Scales may just be tricking me. Keep

in touch adopted litter mate. Phyllis

[Guest guest]

Hi Kim,

I had a wonderful weekend!! My son wanted to take the dog home with him and, to

my surprise, he just loved the kitten! He's not really a cat person so that

really surprized me!!

Kathy

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

[Guest guest]

Thanks Gareth! I live too far away to visit - but please tell your Grandma I

said HI!!

Have fun tomorrow - and be sure to tell me about your visit!!

Your friend, Kathy

Kathy

I<<> Gareth and I have something in common. Hey Margaret!!! How are you and

> Gareth?? Kathy>>

>

Hi, Everyone.....Kathy...Gareth read your question. He said 'I fine.' He

also wanted me to tell you he's going to see his Grandma tomorrow and wanted

me to ask you to come!!! I explained that you lived in Ca.!!! Take

care, Everyone.

Margaret

[Guest guest]

In a message dated 8/1/2002 12:54:35 AM Eastern Daylight Time,

outerspace@... writes:

> was full-inclusion until the first week of 3rd grade. 2 years of

> pre-school,

> K-3 he did have a 1:1 aide.The academics (even after I modified them)

> were out of his reach. I then put him in mainstream for 1 year -- then a

> private

> school for the past two years and with this IEP (almost finished after 47

> pages and

> 9 hours of meetings) I have him mainstreamed at the local Jr High one day a

> week.

>

Hi Kathy,

You are my inspiration!

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 8/1/2002 4:09:42 AM Eastern Daylight Time,

outerspace@... writes:

> One of my best friends' husband was tragically killed over the weekend in

> a motorcyle accident -- she calls me every night around 11:30pm and we talk

> for an hour

> or two!!!

Hi Kathy,

How sad. I hope she can get through this. You are a good friend.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

-Kathy, so sorry about this loss, I just wanted to agree with what

Irma said and please know my prayers are with your friend and also

with you because I can imagine how hard this is. so glad she has you

as her friend, God Bless, Dawn

-- In @y..., " mum592001 " <ICANFIELD@s...> wrote:

> Hi Kathy,

> Many hugs your way and then share it with your friend from us. I

can

> totally relate to this issue when I had lost my 10 yr. old nephew,

> going on seven yrs. and how it had happened, is all his parents had

> to know. It still hurts to know that my brother-in-law and his wife

> never even had a chance to view him and give him the last touch of

> the goodbye or the final hug, no closure. I say it would not have

> been easy for them if they had witness his final day but the family

> and I agreed for his parents to remember him the way he was before

> and not remember the way he had looked on his last day. You mention

> you're not good at this, but you have comfort her the best way

> possible with your presence being there. You are a true friend

during

> this awful tragedy time. Many Blessings your way for lots of

strength

> to cope with this issue as you are being a friend in need. Take

care.

> HUGS!

> Irma

[Guest guest]

Dearest Kathy,

I am truly sorry that the Remicade doesn't seem to be working for you and I

don't blame you a bit for being nervous. I was sorry to see that you were

hospitalized too. I am hoping that something will work out soon for you

Kathy to feel some relief. I very much understand what you are going

through with all the hospitalizations. It is very stressful when you don't

know what is going on. I am sending good and positive thoughts your way

friend.

Love, Sue #2

-- Re: Remicade Treatment

Dear Stilligans Hello to all, hello to you also new

member kisda1aol (DOT) I took my 5th remicade on July

24th. Up until then I only remotely felt better with

it, I became very ill and was hospitolized on the 29th

of July, with what my Dr. felt was a combination of

Still's disease relapse, infection and working to

hard. I only wok 20 hours a week as a Social Worker in

a hospital and Hospice. I had so hoped that the

remicade was the miracle drug I had been waiting for.

I was diagnosed with Still's 3 years ago, I don't know

how long I had it before then. But since I have been

diagnoised I've been in the hospital 3 times and of of

work for at least a month or so after

hospitalization.I am scheduled to have another

remicade on Sept. 4th, and frankly I am a little

nervous, it seems so many people have good luck with

the remicade, I hope that you are one of the lucky

ones. I would also like to know from anyone who's

reading this if they can help me to start getting help

with disability. Where do I go what do I do first?

Also when I did have this relapse my ferritin level

was normal, now I don't know what to think. My Dr.

pumped me so full of Solu-medrol and antibiotics that

I am wondering if the feritin level was down because

of that. any thoughts out there. Your friend Kathy

VanVickle from MN

--- kisada1@... wrote:

> well its been almost two weeks and i haven't felt

> any change yet, but the

> doctors say i may not feel a change untill the 2nd

> or 3rd treatment.

> i wish it did make me hungry ive lost alot of weight

> since i first got

> stills. well im praying that ill start feeling

> better soon

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

In a message dated 8/22/2002 11:52:10 PM Eastern Daylight Time,

outerspace@... writes:

> and I went to the Calif. state fair yesterday. . . and the hottest

> food item is. . .

> deep-fried twinkies!!! I did not try one but they have been on the news a

> few times and

> I saw LOTS of people eating them and everyone I asked " LOVED 'EM!! "

> Good luck with everything.

> Kathy

> Give the trainee a BIG bowl of chili and maybe that will loosen her

> up??LOLOLOL

>

Hi Kathy,

The east is the last to get the latest fad. Thanks for letting me know. I

just may try them, anything to make the $$$$. I have seen deep fried oreos

and snickers at a small fair but I didn't see any lines. Do you know if they

were dipped in a batter first? Good suggestion for the new girl LOL!

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Hi Kathy,

I have heard of the deep fried pickle but haven't seen it at a fair yet. I

have 4 more days to go and I can't wait. I'm just finishing paperwork and my

head is bobbing. I knew the gang would give me a second wind. I haven't been

in the shower yet and I smell like a fry, yuck. I don't want to make or eat a

deep fried anything after this fair until next season. I serve sweet potato

fries with a choice of sweet and sour or honey. I can't make them fast enough

this year. I miss the gang and can't wait until life is back to normal if

there is such a thing. My foreign students have been a blessing. Till next

week.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 10/9/2002 10:09:28 AM Eastern Daylight Time,

outerspace@... writes:

> Remember. . .I have done army crawls in the field next to my sons school

> because he attends this private school that requires you to notify them

> before you show up. Even when I bring a decoy. . .I mean cupcakes the

> office will call the class immediately to let them know I am in the parking

> lot. The school is located 5 minutes from my home and so I walk behind the

> grocery store and through a small field and sit there to observe the play

> area and I can also see them in the kitchen preparing lunch. But. . .

> that's me! I may do strange things but it's for a good cause! LOLOL

>

Hi Kathy,

I'm doing the sneak at school too. It's the only way I can find out if they

are doing what is written in the IEP.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Nice job!! Did you just open your website?

I don't recall seeing it before. Or did you

just redesign it? Whatever, you did a great job.

Almond Joy

Note: forwarded message attached.

Kathy

www.cozmiccreations.com

http://community.syracuse.com/cc/ferrets

[Guest guest]

In a message dated 2/9/2003 4:00:25 PM Eastern Standard Time,

outerspace@... writes:

> On a lighter side. . . I also told children (out in the community) that he

> spoke Russian, English and some French on the side because they wanted to

> know what he was saying. " WOW! " was the response from the kids " He is

> smart! "

>

Hi Kathy,

I'm still laughing!!! Only you could come up with this one.

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

Hi, Kathy,

I haven't posted but have been following 's progress and am just

thrilled for all of you!

I started A/V therapy a few weeks ago and my therapist suggested I make

a tape of my voice! She said it would be very good to learn the sound of it!

So I'm sure that would be fine. Also, DVD's with captioning are great, too.

The captioning on them is usually very exact, unlike television which skips

words a lot. can hear the DVD and see the captions and the hope is

soon he will decipher those voices without needing the captions. Hope this

helps. Continued good luck and success!!

Jackie

Activated Nov.5,2002

[Guest guest]

In a message dated 4/4/2003 1:53:23 PM Eastern Standard Time,

Duffey48@... writes:

> Between and my friends daughter (18 years old

> > >- dying of bone cancer) I have been soooo busy.

> > >I do read all the posts but have not been able to

> > >sit down and respond as much as I would like to.

> > >I wish for the best and hope everyone is dong well.

Hi Kathy,

I also missed this post. I will pray for her.

(((HUGS)))

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

Kathy, could you tell us some more about your condition? Did you just find out

that you have Hep C? Have you had all the blood work and the liver biopsy done?

Even though your symptoms are mild, you need to know if there's any damage to

your liver. Are you seeing a hepatologist? You need to have a clear picture of

where you are with this disease to be able to make an informed decision to take

the treatment or not.

Fire away with any questions you have, this is a great group and there are lots

of people who can explain things for you. And there are lots of good things to

read in the files Leighann has set up on the website.

Marilyn

Re: Re: Hi everyone it's been awhile SSDI

info

I am new at this. I have a mild condition and want some advise as to get

treatment??? Or should I just wait and monitor the condition?? K

[Guest guest]

{ I am a 1B and I am non detectable going on 7 months. }

I'll be going on 8 months June 2 of non-detectable (genotype 3a, stage 3}...

there is definitely life after hell, I can definitely attest to that. I

wish I could say that joint pains get better, but so far, such is not the

case. I was pretty limber prior to treatment, but now, it's all stiff and

not so flexible.

Princess

[Guest guest]

I'm starting to liken this (in my mind anyway) as being similar to

getting confined to a wheelchair. No one offers up physical rehab,

but the constant fatigue syndrome and lethargic lifestyle that came

with it just made everything soft. As I continue to do more active

things (ie. riding my bike, working in the garden etc.) I do feel

the difference in my energy levels, although some days are tougher

than others. That is if you consider sleeping till 1:30 in the

afternoon tough <g>

> { I am a 1B and I am non detectable going on 7 months. }

>

> I'll be going on 8 months June 2 of non-detectable (genotype 3a,

stage 3}...

> there is definitely life after hell, I can definitely attest to

that. I

> wish I could say that joint pains get better, but so far, such is

not the

> case. I was pretty limber prior to treatment, but now, it's all

stiff and

> not so flexible.

>

> Princess

[Guest guest]

Do you remember what your viral load is? When I heard mine was something like

350,000, I freaked, then I saw posts from others whose viral load was 25

million! I think, and others will correct me if I am wrong, but all a high

viral load means is that your virus is active, but it doesn't mean it's doing

damage.

I'm with Jeanie, I thought the article on Web MD -

http://my.webmd.com/content/article/63/72153.htm?lastselectedguid={5FE84E90-BC77\

-4056-A91C-9531713CA348} - gives those of us with no or little damage some hope.

When I was on the waiting list for treatment, Schering sent me a book about

Hepatitis and the package inserts from Interferon and Ribavirin. At the top of

one of the pages, there was a black box with some writing inside. It said that

this medication *will* cause hemolytic anemia. I didn't know what that was, so

I researched it on the net. It means that the medication will destroy your red

blood cells faster than your bone marrow can make new ones. Oh, goody! Reading

the other side effects didn't make me feel any better, either.

If these protease inhibitors that are being tested do work out, it will mean

that you can take the treatment at a much smaller dose, the chance of it working

on genotype one will be far greater than it is now, and because it will be a

smaller dose of medication, the side effects won't be so chilling

And something you should ask yourself is " How am I feeling? " Do you feel sick?

How bad is it? For me, my only symptom was extreme fatigue. I got lots of good

advice, a lot of it from my Be In Charge nurse at Schering, and I feel tons

better than I have in years. Drink lots of water - 1 oz. for every 2# of body

weight per day. Walk, even if it's only to the corner and back, if you do it

every day, you will develop more energy. Take a good multivitamin without iron

in it. Try to eat 60 grams of protein a day. Generally, meat gags me (so sad,

because I used to love a good steak!), but I went to a health food store and

found protein drinks (*without* iron) to try to keep my protein intake up. Not

getting enough protein will make you tired all by itself. If you get fatigued,

stop and drop if you can. I used to be ready for another 8 hours sleep an hour

after I woke up in the morning, and I would force myself to stay awake because I

" shouldn't " be tired. I found if I lay down and take a nap when I feel like I

need one, I will only sleep 20 minutes to an hour, and then I wake up and have

energy.

I still have my days, and sometimes 2 or 3 in a row, where I am just exhausted.

But hardly ever. And it only took me 2 weeks of doing the things I just

described, to start feeling a whole lot better. That's when I made my decision

not to do treatment at this time. When I first got on the list to do treatment,

I felt so crappy that I didn't think the treatment would be any worse. But once

I started feeling better doing such simple things, I didn't want to risk the

sides that so many of my wonderful friends on this list are having. And some

side effects don't go away after the treatment stops.

Whatever decision you make is the right decision for you, just have faith in

yourself and trust your gut instincts.

Marilyn

Re: Re: Kathy

My geno type is a one but my viral load is high. the doctor says I can wait

for 3 to 5 years. I would then have another biopsy. I have mild damage a one,

and a two inflamation. I am scared of side effects. Still thinking. Many people

on the board seem to have had horrible reactions. Kla

[Guest guest]

In a message dated 6/4/2003 12:23:37 AM Eastern Daylight Time,

UrthMan@... writes:

> Charlyne. . . STAY THE COURSE!!!!!!

>

> Zeb thanks you. . . I thank you. . . we all thank you!!!!

Hi Kathy,

I have always preached knowledge is power but sometimes that knowledge can

leave you powerless. I'm back on track.

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

At 01:47 AM 6/4/2003 -0400, you wrote:

>but sometimes that knowledge can

>leave you powerless. I'm back on track.

Knowledge is a great tool, but it is rendered helpless in times of crisis

without folks to shore you up. I'm sure you know that we're all walking

with you in our thoughts and prayers.

I love the way folks rally on this list.

[Guest guest]

Kathy

OK, who spilled the beans? You weren't supposed to know that I was

coming to Niagara Falls for a visit this weekend. It was supposed to be

a surprise. Poop!! Oh, well. Sharon said we're going out partying

Friday

night....boy I'm game for that!! Tell your Mom the quilt arrived that

she

made for 's baby. I had told her that I was coming out with Sharon

and I could get it then to save from paying postage but she insisted on

mailing it. She's such a sweetheart.

Well, I guess I should get some sleep. I'll see you Friday.

Re: Shaye

I think I will hold on with this soap group. I figure if I can get rid

of

all of the other groups, that should take care of most of my problems.

I like

this group, and read most of the mail. At least if I need some help

with my

soaps, I will have someone to help me. So dont take me off right now.

I

might have to change to another server if I cant get this worked out, so

then you

will be deleted anyways, and I will have to write to and have her

sign me

back on again.

and my cousin are coming out this weekend to help me finish packing

my

house. I am closing on Friday, and moving to a smaller house. I

think you

all know that I got seperated last year, and in the meantime, my husband

got

fired from his job. My life is one big mess right now, and my diabetes

is

killing me from all this work. Of course the husband hasn't bother to

offer any

help at all. I hope when my life gets straightened out, I will be able

to get

back on line with you guys, and find out what everyone has been doing.

Talk

to all soon I hope, and thanks Shaye for writing. Kathy

[Guest guest]

I order from my naturopath, but I would contact Williss Langford at

willissl@.... He gives you helpful information to on seizures (lectures at

autism one conferences).

He can order it for you.

Kathy

[ ] Kathy

Hi!

It is too early to know what I need to get for my son, but that list

you gave about glyconutrients( i know I misspelled that, but I forgot

to write it down.) is foreign to me. Do you all on here mail order or

go to particular places for these supplements?

Thanks!

Joanie

[Guest guest]

Hi Kathy,

My daughter wears the spinecor brace. That's pressure straps. We are waiting

for surgery. She will be having growing rods in June. IF you need any more

info, please get in touch.

thebratbybunch@...

Take care

Gill

[Guest guest]

Kathy,

It's so sweet of you to be worried because I was absent! I'm doing better and am getting ready to just go chill with my daughter and watch a movie.