Re: RE:Gotta get this out

May 30, 2002

it is hard. my friend just mailed me and said it was so nice to here i was

feeling " not too bad " she said it was nice to hear something positive out of

me for a change. i also feel not as crazy to be able to talk with all of you

over our problems and triumphs, we need more triumphs!!! if nothing else we

always have each other. thanks for being there. kathy in il ps i just got

a call from my company. they have rec'd my letter to extend my time for

signing the termination agreement. they said it would be fine. just to call

them when it is all settled. of coarse it'll take me longer to get my $, she

says.

May 30, 2002

thanks. i just got an e-mail from my cousin saying he is ok and he will be

calling me in a day or two. so i guess that means he will be gone for a

couple days. yippee!! kathy in il

May 30, 2002

Kathi,

I'm really sorry you are feeling so horrible. I noticed you weren't

posting and was hoping you were out gardening.

Don't apologize for writing what you did. That is exactly why we are

here.

Given the damn Enbrel shortage, is there any reason that your doctors

are opposed to trying Remicade instead? There is no problem with the

Remicade supply.

Or what about that trip to Texas we talked about?

Hope things will turn around soon,

[ ] RE:Gotta get this out

> Hi everybody...gotta get this out...and possibly get some feedback....

> I have been in major flare ....was given medrol dose pac and felt sooo

> good for about a week...then I guess it is out of my system and

> crashing down I come...I saw PCP yesterday and we talked about the use

> of long term steroid treatment..and how that is not a possibility for

> me because of the severe destruction of my spine already they just

> dont want to chance more...surgery is not possible because three

> different ortho surg refused to do surgery because of the scleroderma

> I get the big pep talk about how I have been so positive about all

> this mess and just one of my problems would knock most people down and

> I have been such a good girl dealing with

> scleroderma-lupus,fibro,severe DDD of lumbar and cervical spine, ...on

> and on...that I know there is no cure and there really is not a

> treatment for scleroderma...just band aids for the symptoms...I dont

> want to be a good girl right now...I am sick and tired of being sick

> and tired...by this time I am bawling like a baby...and he says come

> on this just isnt you....we still have the enbel//I have been waiting

> 7 months and Immunex says it looks like not until late fall...they

> told me the enbrel was just a shot in the dark , but I was so excited

> thinking maybe I will get my life back..I think to myself get over it

> ...you are not dying of cancer or some other terrible disease, but

> it is so hard to be positive at times...I think I have gone through

> all of Helen Kubler Ross's steps to find myself back at number one...

> sorry to bother you all with this....but it really helps to know that

> other people are going through much the same...not that I am glad that

> other people suffer, but that others can understand...well I guess I

> am through my personal pity party...thanks to all of you for being

> there....Kathi in OK

May 30, 2002

Dear Kathy...my goodness, you are going through so much. Please know

I'd give you a big hug if I could, and I keep you in my prayers. Think

of us all here as a shoulder to cry on, as well as a family to rejoice

with. You are a sweet lady. God bless you bunches.

Your friend...

Tess

May 30, 2002

Dear Kathi...I'm sorry you are in such a tough spot right now. I'm with

...could you possibly check on Remicade Infusions with your Dr.?

They do help a great many people.

You are a brave lady...and I know you probably don't always feel so

brave. You are in my heart & in my prayers. I'm glad you are getting

some feelings out.

Much Love & Hope...

Tess

May 30, 2002

Kathi, you certainly have a reason to have your own pity party. We've all

been through flares where they just won't go away, and you feel like you're

at your wit's end. I was there last month, and don't know how I made it

through. The pain wears you down emotionally, and then your having to wait

so long for the Enbrel a major frustration as well.

Don't ever apologize for venting to the group. That's what we're here for!

Sending you hugs and prayers,

Carol

[ ] RE:Gotta get this out

Hi everybody...gotta get this out...and possibly get some feedback....

I have been in major flare ....was given medrol dose pac and felt sooo

good for about a week...then I guess it is out of my system and

crashing down I come...I saw PCP yesterday and we talked about the use

of long term steroid treatment..and how that is not a possibility for

me because of the severe destruction of my spine already they just

dont want to chance more...surgery is not possible because three

different ortho surg refused to do surgery because of the scleroderma

I get the big pep talk about how I have been so positive about all

this mess and just one of my problems would knock most people down and

I have been such a good girl dealing with

scleroderma-lupus,fibro,severe DDD of lumbar and cervical spine, ...on

and on...that I know there is no cure and there really is not a

treatment for scleroderma...just band aids for the symptoms...I dont

want to be a good girl right now...I am sick and tired of being sick

and tired...by this time I am bawling like a baby...and he says come

on this just isnt you....we still have the enbel//I have been waiting

7 months and Immunex says it looks like not until late fall...they

told me the enbrel was just a shot in the dark , but I was so excited

thinking maybe I will get my life back..I think to myself get over it

....you are not dying of cancer or some other terrible disease, but

it is so hard to be positive at times...I think I have gone through

all of Helen Kubler Ross's steps to find myself back at number one...

sorry to bother you all with this....but it really helps to know that

other people are going through much the same...not that I am glad that

other people suffer, but that others can understand...well I guess I

am through my personal pity party...thanks to all of you for being

there....Kathi in OK

May 31, 2002

Hi Kathy - please do not feel like you are a bother or having a pity party.

Nobody would choose this!! I am new here and have felt such an outpouring of

support, it has been amazing.

I have had a very a painful week and have poured my heart out including my

fears, frustrations, anger and resentments. I have only received validation

for my feelings. this iS the place to express what you are feeling and feel

safe to do so.

I am so sorry you are having a hard time right now. I have no words of

wisdom as this is all new to me. I hope you will feel/find some relief soon.

Let us know how you are doing.

(((Hugs)))

C.

>Hi everybody...gotta get this out...and possibly get some feedback....

>I have been in major flare ....was given medrol dose pac and felt sooo

>good for about a week...then I guess it is out of my system and

>crashing down I come...I saw PCP yesterday and we talked about the use

>of long term steroid treatment..and how that is not a possibility for

>me because of the severe destruction of my spine already they just

>dont want to chance more...surgery is not possible because three

>different ortho surg refused to do surgery because of the scleroderma

>I get the big pep talk about how I have been so positive about all

>this mess and just one of my problems would knock most people down and

>I have been such a good girl dealing with

>scleroderma-lupus,fibro,severe DDD of lumbar and cervical spine, ...on

>and on...that I know there is no cure and there really is not a

>treatment for scleroderma...just band aids for the symptoms...I dont

>want to be a good girl right now...I am sick and tired of being sick

>and tired...by this time I am bawling like a baby...and he says come

>on this just isnt you....we still have the enbel//I have been waiting

>7 months and Immunex says it looks like not until late fall...they

>told me the enbrel was just a shot in the dark , but I was so excited

>thinking maybe I will get my life back..I think to myself get over it

>...you are not dying of cancer or some other terrible disease, but

>it is so hard to be positive at times...I think I have gone through

>all of Helen Kubler Ross's steps to find myself back at number one...

>sorry to bother you all with this....but it really helps to know that

>other people are going through much the same...not that I am glad that

>other people suffer, but that others can understand...well I guess I

>am through my personal pity party...thanks to all of you for being

>there....Kathi in OK

>

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May 31, 2002

Carol...Kathy...and .....thanks for the kind

words....Tess....I think you send the best cyber hugs

to us all.......the Remicade is a possible...my

husband is retired military and Tri-Care wont pay for

infusion right now because my rheumy is not on their

list...when and if my paperwork ever gets processed

from Social Security because they back dated four

years it would be covered under that...the trip to

Texas]]]]]

> I told you come on...LOL...being serious I did make

that call to Dr. Mayes we talked about...I just have

to wait my turn...I have been avidly reading the

posts about meds and the people that really need

them...it starts my mind going in a zillion different

areas...I wish the drug companies had to give more of

their pfofits for research...instead of just more

monies for more new drugs to make more money....I have

had quite a few doctors express the opinion that most

of the autoimmune diseases hit women primarily and the

major drug companies dont see alot of profit to

develop new drugs for the likes of

scleroderma...PA..lupus...ect..

I makes me wonder if these were mens diseases how long

it would take to come up with the newest treaments or

cure.....and no I am not a man hater.....just seems a

bit questionable to me..once again this group is the

best I have come across...and I feel like I have a new

family that really knows what unconditional is...Kathi

in ok

>

__________________________________________________

May 31, 2002

Kathi,

Any time you or anyone else for that matter, wants a pity party, I am the gal

to contact. Living here in South Florida, I have an endless supply of cabana

boys who will fan us with large palm fronds, bring us cool tropical drinks

and basically just be at our beckon call! Sounds pretty neat, huh? No docs,

no prescriptions, no insurance companies, no spouses or significant others,

no children, just us and creaky old bones with these young nubile perfectly

tanned cabana boys! They sure make a party come alive. Approximately 2

hours after everyone arrives, we have our limbo contest and then we wrap it

all up with a conga line dance! Oh those were the days!!!!!! Now this

fantasy is sure to take all that ails you away!

So everyday here is a cheese and whine party for someone and we are all more

than happy to either host or sometimes need to be the honoree!

This will ALWAYS be your safe place where no one judges you or criticizes

you. This disease stinks and ONLY we know how much air freshener is

appropriate.

So, folks, the WELCOME sign is lit and open for business!

Make it a good one and take care of YOU!

Gentle, tender, angel hugs to all,

Debs in FL

May 31, 2002

Kathi,

Come on down! I am about 200 miles south of Ocala. It is worth the trip.

We are one of the largest tourist attractions in Florida right after Walt

Disney World, Busch Gardens and Universal Studios. However, one thing

different, all orthopedic devices must be checked at the front door and it is

a BYOM party. Bring Your Own Medication.

Get some rest, maybe not sleep, but rest, it is the best medicine that God

has to offer us.

Gentle, tender, sleepy time angel hugs,

Debs in FL

May 31, 2002

Kathi,

Any time you want to throw a personal pity party, just come here and at

least

you won¹t be alone. You are entitled to these feelings and it¹s good to get

them out.

We try to hard to keep a ³stiff upper lip² but sometimes it is just to

overwhelming. I go through these bouts of anger and feelings of despair,

but then my fighting instinct comes back.

Kick and scream if you have to. You have earned the right. When you¹re

done crying, wipe the tears and go right back to step number 1. We all

grieve your loss with you.

(((((Gentle hugs)))))))))

a

On 5/30/02 12:47 PM, " iamladybird " <iamladybird@...> wrote: