a ~ Mom ~ Everyone ~ Remicade Appt.

[Guest guest]

In a message dated 4/16/00 7:19:05 PM Pacific Daylight Time,

aA@... writes:

> ,

> It is wonderful to hear that you are able to go back to your writing

> workshop!! I am anxiously waiting for the 20th so I can hear more great

> reports of your success with Remicade.

> Sorry the prednisone withdrawal is causing you such pain. Hang in there

> , it will get better. I hope you get off of it and never have to take

> it again. These drug changes really are hard on our systems. I hope you

> get stabilized soon.

> a

Hi a,

Thank you! Sorry I didn't respond sooner. I am still a bit behind in my

email, but, like I said, I will not delete until I am through with them.

Oh, I also lowered my Prednisone again by 1 mg. I am now at 8 mg and am going

to fight it out. I haven't let arty beat me in 18 years, I sure as heck won't

let a little pill do it! =) I am in some pain, but not even enough to

mention. My hands are a bit swollen as well. But I think the pain and

swelling I am having today is all the cleaning I did yesterday. I got lots of

laundry done. Cleaned my bedroom, put clothes away, made the bed with my gift

of new sheets from my Mom. Thank you, again, Mom. These sheets are WONDERFUL!

They are made of T-shirt material. Soft cotton. So cozy! I slept beautifully!

WOW! Today I am lounging in my PJ's all day! Since tomorrow will be a big day.

I am just having such a " wonderful " time in my life! " It's a Wonderful Life. "

The Paxil and the Remicade have literally given me my life back. I still get

moody, but not depressed. I am up out of that damn dark hole! :-]

Tomorrow is my 3rd Remicade appointment and after this one I will only be

going in every 8 weeks. I will be done with the baseline. Woo~Hoo! I have to

get up at 6am to get ready for it. Mom got a job, (Congrats Mom!), and Ryder

works from 8 to 5, and my appointment is at 8:30 am. So, Ryder is dropping me

off around 7:30 am and Mom will get me about lunch time to take me home. That

way they aren't missing work. See what I mean about the wonderful people I

have around me who go out of their way for me? ALL THE TIME! Thank you, Mom &

Ryder! I love you, both, more than anything! (Ryder isn't on this list, in

case you were wondering. But I wanted to " publicly " thank him) I will be at

my appointment an hour early, but I can handle bigger days now. I am going to

try to get my IV started early though, if Nurse Barb can fit me in. If not, I

will read or write. :-D

I best send this. It got a lot longer than I planned. I'm sorry!

All my best,

[Guest guest]

That's my girl!!!

[Guest guest]

,

No apologies needed ! I really admire your attitude. You've made

me sit back and examine my feelings about this disease. I had it for 25

years,

but the first 6 or 7 years were tolerable. Have I accepted it? Yes.

But I still dwell to much on what I can't do and what I have lost.

You have made me think in a different way. I am making that list you

requested, and am surprised at how many positive things are on it.

I also love your attitude towards your family. You appreciate the things

they

do for you. Disability and illness puts so many people in a cave. They

are so angry that they lash out at the ones closest to them, their family.

I too am blessed with a great family that helps me whenever I need them.

I hope today's appointment brings more life back to you. Congratulations

on the prednisone reduction!!!

a

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

From: <Rysu19@...>

< egroups>

Sent: Wednesday, April 19, 2000 8:19 PM

Subject: [ ] a ~ Mom ~ Everyone ~ Remicade Appt.

>

> Hi a,

>

> Thank you! Sorry I didn't respond sooner. I am still a bit behind in my

> email, but, like I said, I will not delete until I am through with them.

>

> Oh, I also lowered my Prednisone again by 1 mg. I am now at 8 mg and am

going

> to fight it out. I haven't let arty beat me in 18 years, I sure as heck

won't

> let a little pill do it! =) I am in some pain, but not even enough to

> mention. My hands are a bit swollen as well. But I think the pain and

> swelling I am having today is all the cleaning I did yesterday. I got lots

of

> laundry done. Cleaned my bedroom, put clothes away, made the bed with my

gift

> of new sheets from my Mom. Thank you, again, Mom. These sheets are

WONDERFUL!

> They are made of T-shirt material. Soft cotton. So cozy! I slept

beautifully!

> WOW! Today I am lounging in my PJ's all day! Since tomorrow will be a big

day.

>

> I am just having such a " wonderful " time in my life! " It's a Wonderful

Life. "

> The Paxil and the Remicade have literally given me my life back. I still

get

> moody, but not depressed. I am up out of that damn dark hole! :-]

>

> Tomorrow is my 3rd Remicade appointment and after this one I will only be

> going in every 8 weeks. I will be done with the baseline. Woo~Hoo! I have

to

> get up at 6am to get ready for it. Mom got a job, (Congrats Mom!), and

Ryder

> works from 8 to 5, and my appointment is at 8:30 am. So, Ryder is dropping

me

> off around 7:30 am and Mom will get me about lunch time to take me home.

That

> way they aren't missing work. See what I mean about the wonderful people I

> have around me who go out of their way for me? ALL THE TIME! Thank you,

Mom &

> Ryder! I love you, both, more than anything! (Ryder isn't on this list, in

> case you were wondering. But I wanted to " publicly " thank him) I will be

at

> my appointment an hour early, but I can handle bigger days now. I am going

to

> try to get my IV started early though, if Nurse Barb can fit me in. If

not, I

> will read or write. :-D

>

> I best send this. It got a lot longer than I planned. I'm sorry!

> All my best,

>