(No subject)

December 27, 2001

I agree, I like the CEDA list the way it is. I understand how hard it is to

get through all the email somedays. There is another EDS list with much less

mail, and it is almost all medically related--you might want to try that one.

It is called edsers, and you should be able to find it under search at

yahoogroups.com. If you search EDS you will find there are many smaller

lists. There also is one specifically for those and their loved ones, with

the vascular type, and of course if you deal with a lot of vascular issues we

welcome anyone. That is at VEDS--through yahoogroups.com. this list too

does not have many emails. I guess we are the quiet sort. Hope this helps

you, but I wouldn't want to change the CEDA list--I have way too many friends

from around the world, and naturally I like to chat, and I like the

conversations, even if I don't jump in too often. I agree with Kristi--it is

the support I like, not just the medical info.

Love, Sue Ginley

December 27, 2001

In message , BEAPPLECIDER@... writes

>Hi everybody I was wondering if we could talk about starting a new list. Ive

>noticed that there are two conversations going on here and I was hoping we

>could sort the two out. As you know quite a bit of mail is sent by the CEDA

>group and it takes a lot of extra time out of a busy day to sort out the

>medical information and the random conversations that are sent out to

>everyone on the list. I propose that the CEDA list be exclusively for

>medical information and medically directed questions. I also propose that we

>start a new list called CEDA2 or something, the name really doesnt matter,

>but have that list exclusively for chit chatting. You know, all the pray

>for me, merry x-mas, how is your family doing stuff.

I have been on this list for four years or so and it has always been

like this. However, all items are titled appropriately and it is easy to

avoid the chatty threads if you don't want to read them. I love it the

way it is. CEDA not just for information, it is a FAMILY. It brings with

it all the things that come with a family and I wouldn't have it any

other way.

--

Fuller

Owned and operated by fur kids Grace, Poppy and Flo

Folding for the future with the Arthritis Warriors team.

December 27, 2001

I need to echo Sue, Kristi, and a couple other people's request to keep the CEDA

group the way it is. I can't tell you how much it has meant to me to have made

such wonderful friends, not only for EDS, but about any problem or concern I've

had. It has made a HUGE difference for me, and I'm sure all the prayers I've

requested have also made a HUGE difference. I want to know when others need my

help and prayers, as sometimes, all I can do is pray, or just be here as a

sounding board, but it is something, and I want to do it for my family! That's

what family is about in my world. I LOVE it the way it is, and LOVE all the

members!!

Love Lana

December 27, 2001

I think that this list is for support primarily, that was my understanding

anyway, so the " pray for me, merry Christmas, and how is your family doing

stuff " is the most important. I can look up the medical information doing a

search on the internet- no problem, but finding other people that understand my

situation is the most valuable to me. CEDA is the best EDS group there is- I say

" why mess with a good thing? "

Kristi

(no subject)

Hi everybody I was wondering if we could talk about starting a new list. Ive

noticed that there are two conversations going on here and I was hoping we

could sort the two out. As you know quite a bit of mail is sent by the CEDA

group and it takes a lot of extra time out of a busy day to sort out the

medical information and the random conversations that are sent out to

everyone on the list. I propose that the CEDA list be exclusively for

medical information and medically directed questions. I also propose that we

start a new list called CEDA2 or something, the name really doesnt matter,

but have that list exclusively for chit chatting. You know, all the pray

for me, merry x-mas, how is your family doing stuff.

Let me know what you guys think of this proposal.

Thanx, Jocelyn

December 27, 2001

Beapplecider, I do not want anything about this list to change at

all it is perfect the way it is! This list is about support and its

so good to see people getting help when they need it. This list is

also just about the only place which connects me to the outside

world too and if it were to be broken apart i would feel part of

nothing. Please do not change it Jill, please don't!

> I think that this list is for support primarily, that was my

understanding anyway, so the " pray for me, merry Christmas, and how

is your family doing stuff " is the most important. I can look up the

medical information doing a search on the internet- no problem, but

finding other people that understand my situation is the most

valuable to me. CEDA is the best EDS group there is- I say " why mess

with a good thing? "

> Kristi

> (no subject)

>

> Hi everybody I was wondering if we could talk about starting a

new list. Ive

> noticed that there are two conversations going on here and I was

hoping we

> could sort the two out. As you know quite a bit of mail is sent

by the CEDA

> group and it takes a lot of extra time out of a busy day to sort

out the

> medical information and the random conversations that are sent

out to

> everyone on the list. I propose that the CEDA list be

exclusively for

> medical information and medically directed questions. I also

propose that we

> start a new list called CEDA2 or something, the name really

doesnt matter,

> but have that list exclusively for chit chatting. You know,

all the pray

> for me, merry x-mas, how is your family doing stuff.

>

> Let me know what you guys think of this proposal.

>

> Thanx, Jocelyn

>

December 27, 2001

I haven't posted much lately....too freaked out for other reasons...getting

off old meds.

I do want to say that this list has made my life a lot more bearable as well

as fun, so I'm putting my two cents worth in to keep the list like the family

affair it is now.

Blessings, Doris

December 27, 2001

I agree with you Lana, 100%, and all the others that have written previous

to this. So I won't restate them.

Until I found CEDA-I spent nearly 20 years without knowing another person

that had EDS. (accept family members that denied having it) I had no one to

relate to and no one that could understand what it's like to live with it. I

felt so alone.

I have had a huge change in my life because the sharing, and I know the

things I experience are completely normal for an EDSer.

Never again do I want to go back to what was! I would miss this wonderful

family and all the love and support there is here.

cindyh

~~

Subject: Re: (no subject)

> I need to echo Sue, Kristi, and a couple other people's request to keep

the CEDA group the way it is. I can't tell you how much it has meant to me

to have made such wonderful friends, not only for EDS, but about any problem

or concern I've had. It has made a HUGE difference for me, and I'm sure all

the prayers I've requested have also made a HUGE difference. I want to know

when others need my help and prayers, as sometimes, all I can do is pray, or

just be here as a sounding board, but it is something, and I want to do it

for my family! That's what family is about in my world. I LOVE it the way

it is, and LOVE all the members!!

>

> Love Lana

February 14, 2002

Hi Teri:

Yes you will be around to raise your children. I had a pt 20 years ago at age

41. They'd discovered the lump about 2 years before that and watched it and

when it started to grow they took it out. Many of my friends have no idea I've

had surgery because you can barely see the scar.

Pat Arizona

pt 1981

1st CT 2002

(no subject)

I just recently found out I had papillary thyroid cancer. What a shock. I was

so scared. I had surgery monday to remove my thyroid. I am so tired. Is that

normal? I also cry a lot. I thought I was so healthy, now I`m scared I have

other cancers in my body. I am supposed to wait 4 weeks and then see an

endoccrinologyspecialist who will measure something in my blood and give me

some kind of radiation. As you can see I was given more info than I can

remember. I don`t know the pathology results, just that the tumor was about

1.2 centimeters. The doctors are all so casual. The surgeon said there was

over 95% cure rate. They said not to worry, that yes I will be around to

raise my children. I still don`t feel better. Would love to hear from others

in my situation. I am 39 years old. What is the common age for this cancer to

occur?

Thanks for listening,

Teri e-mail address- Kmarstu@...

February 14, 2002

Hi Teri,

I'm sorry you're so scared right now, but it will get better. It is

normal to cry a lot and be depressed for a little bit while your body

adjust to everything that's going on. It'll probably even get a

little worse when they make you go hypo, but it will get better.

We're all proof of that. You came to the right place for support

though. This is a wonderful group. You will live too, I promise! The

cure rate is very high and the rate of it spreading and recurring is

low. It does happen, but it is infrequent. I'm not sure what the

average age is, but I'm 24 and I've met several other women my age

that have gotten it, so it can happen at just about any age I assume.

Keep asking questions and venting when you're scared or frustrated,

it really helps.

Good luck,

Tracey

TT 09/04/01 Pap. Car. 4.5 x 5 x 4.5cm

RAI 10/23/01

Scan 10/30/01

Levoxyl 167mcg

> I just recently found out I had papillary thyroid cancer. What a

shock. I was

> so scared. I had surgery monday to remove my thyroid. I am so

tired. Is that

> normal? I also cry a lot. I thought I was so healthy, now I`m

scared I have

> other cancers in my body. I am supposed to wait 4 weeks and then

see an

> endoccrinologyspecialist who will measure something in my blood and

give me

> some kind of radiation. As you can see I was given more info than I

can

> remember. I don`t know the pathology results, just that the tumor

was about

> 1.2 centimeters. The doctors are all so casual. The surgeon said

there was

> over 95% cure rate. They said not to worry, that yes I will be

around to

> raise my children. I still don`t feel better. Would love to hear

from others

> in my situation. I am 39 years old. What is the common age for this

cancer to

> occur?

>

> Thanks for listening,

> Teri e-mail address- Kmarstu@a...

>

February 14, 2002

Hi Teri;

welcome... of course you're tired.. you just had surgery and a very

scarey diagnosis... that alone is a huge shock to your system.. But

it will get better.... In 4 weeks you'll see an endrocrinologist,

good move, they are usually much better at the care of thyroid cancer

than oncologists are because they see more of it... They'll measure

your TSH probably (thyroid stimulating hormone) the longer you are

without a thyroid or off thyroid meds, your TSH gets higher, when it

gets higher than 30 typically, they can do RAI - Radioactive Iodine.

The thing about thyroid cancer is, its originally thyroid tissue and

hence it takes up iodine (most other tissues don't ) so you take

radioactive iodine, the remaining thyroid tissue, cancerous or not,

happily takes it up, and bingo, gets ablated because it was

radioactive iodine.. its really pretty clever. And not as bad as

radiation treatments or traditional chemo. You'll be tired, moody,

perhaps retain some water, maybe dry skin, and brittle hair, but its

not like chemo where all your hair falls out, and it doesn't burn

like radiation, and once an RAI treatment is over, you go on thyroid

medication (unithroid, synthroid, levoxyl...) thereby replacing the

hormones your thyroid used to make. And your energy comes back, and

most likely you'll go back to life as it ever was...

its a very curable cancer, and a very livable cancer.. I'll let some

of the long time folks on the list weigh in with how long and well

they've survived (being a rookie only 2 1/2 years into this myself)

but welcome, ask lots of questions, you've come to a great place for

information and support

barb

TT 8/99 RAI 4/00 Clean Scan 12/00

> I just recently found out I had papillary thyroid cancer. What a

shock. I was

> so scared. I had surgery monday to remove my thyroid. I am so

tired. Is that

> normal? I also cry a lot. I thought I was so healthy, now I`m

scared I have

> other cancers in my body. I am supposed to wait 4 weeks and then

see an

> endoccrinologyspecialist who will measure something in my blood and

give me

> some kind of radiation. As you can see I was given more info than I

can

> remember. I don`t know the pathology results, just that the tumor

was about

> 1.2 centimeters. The doctors are all so casual. The surgeon said

there was

> over 95% cure rate. They said not to worry, that yes I will be

around to

> raise my children. I still don`t feel better. Would love to hear

from others

> in my situation. I am 39 years old. What is the common age for this

cancer to

> occur?

>

> Thanks for listening,

> Teri e-mail address- Kmarstu@a...

>

February 14, 2002

Hi Teri,

This is definitely a scarey, overwhelming diagnosis

and " ramble " through life's many paths. Like anything

else, the trail may seem rocky and steep at times, but

if you can get through the hard parts - the view at

the top is really quite rewarding. I am still on the

trail, but I know that someday I will be able to sit

back and enjoy the view.

Crying and being tired are all perfectly OKAY.

Afterall, you just had major surgery, your hormones

are all out of whack and it is a really overwhelming

situation. I had my surgery 5 days before Christmas

and spent all Christmas day in tears and in bed. As

you recover, you will begin to feel more and more like

your old self. There are tests and treatments to

follow, but I found the best thing to do for myself

was to take things one day at a time - and focus on

what I needed to do in the moment in order to prepare

for the next. For me right now, it's getting

readjusted to my thyroid replacement hormone (as I

just had my radioactive iodine treatment) and wait for

the results of my treatment. For you, it may be

recovering from surgery, R & R and possibly generating a

list of some questions and concerns that you can ask

your endocrinologist when you see him/her in four

weeks.

I am 23, so getting cancer was a real shock. I never

knew any 23 year olds with cancer - but through this

group, I know many women around my age with cancer.

They say that if one was to get cancer, then thyroid

cancer is the best to have. That doesn't really ease

a lot of anxiety, because it's still cancer. I found

the best anxiety and fear relief for me was to become

informed and educated about my condition. In this

regard, you have come to the right place. Keep

reading the posts and write in if you have any

questions. That way, you can take lots of questions

to your doctor and hopefully, put your mind at a

greater sense of ease.

It's a hopeful and bright tomorrow - one where you can

be around to raise your children and watch them raise

theirs.

Best of luck to you and take care of yourself.

Pattie

=====

Dx Familial Pap Thyca, Hashimoto's Thyroiditis - 11/01

TT - 12/20/01

RAI 150 mCi - 2/12/02

__________________________________________________

February 14, 2002

Hey Teri, I too just found out 3weeks ago after having my thyroid remv. along

with 1 lymph node. What a shock I never thought in a million years I would be

dealing with this at age 37. I have a son 19 and a daughter 10 who are my life

along with my husband of course and the thought of not being with them was over

whelming. However after much research and this site I have learned that there is

life after this, I cant wait to get to that. I am awaiting my 1st RAI treatment

and alittle nervous about the whole ordeal. Being hypo waiting foe the

treatments has been alittle rough too but if it gets me to the other side of

this I'll do it. My advice is read read read and talk to people alot in your

time of need. Feel free to call on me any time not that I know that much but I'm

a good listener. Take Care, RENEE (no subject)