Re: Re: Reneness update and apology for absence

[Guest guest]

Deb,

I need to know more about Methotrexate. I'm up to 10 and I know I will be

up more as of tomorrow. What's the usual ceiling????? How long do you suffer

after taking it, and what helps? What symptoms??? I never paid attention

in the past, and I know it's been discussed (slapping own self on wrist).

Thanks,

Debbie wrote:

Welcome

Back Reneness! You were missed while you were away. I hope

you are doing better now. I know I have missed your humor and wit.

I used to be a "writer of sorts" myself and now have trouble even

writing a paragraph! I was trying to figure out how I could set up

my pc next to the bed as well. But if I did that, I probably would

never get out of bed unless to go to the bathroom!!! But I know you

are a hell of a lot worse than I am and you deserve the comfort.

Most of my Christmas shopping was done on my computer. I only had

to go to the store twice and my husband (very unenthusiastically)

wheeled me around in one of their wheel chairs. But your mother

sounds like she is a big help to you. You are very lucky.

I am now taking 20mg methotrexate and am waiting on the Remicade

approval from my insurance company. It's taking forever and I have

a feeling that it's not gonna fly. BUt I am trying to think

positively.

I know what you mean about this group. I don't know what I would

do with all these loving, supportive people. I am glad you are back

and I hope things are going better for you. Luv, Debbie

> Aisha's Army Corps!

>

> Thanks for the cute card. Mean cold and horrific bone pain

> bed for one week solid. Of course., I have over 300 messages to

> read/weed. Love you all and hope you are having a happy new year.

>

> P.S. Immuno doc has me up to 10 mg of remicade and wants to go

back to

> twice a month (contrary to Baughman's advice -- although this doc

has

> even more immuno research experience, so I'm going to try to trust

him

> -- for now). Also up to 10mg of methotrexate and will be going up

more

> each week but they haven't told me the ceiling there. This time I

did

> "feel" the immunosuppressant, i.e. I was sick as hell on top of

the cold.

>

> Well, I have today and tomorrow until I get sick all over again.

Had a

> chance to take a look at all my blood work since August. Very off

on

> Eiosonophils (?) and Neutrophils -- I don't remember which is way

high

> and which is way low, but it's been consistent. Other white cells

are

> high and low but not severe. AST was off until November. And, as

I

> suspected, I am now POST menopausal. Now I know why the hot

flashes

> have permeated my days. Thank god for crushed ice!

>

> Sorry for going on -- just giving an update. I finally read the

smaller

> pamphlets from the conference -- talked about fairly common to

have sarc

> in joints and bones -- have felt like feet are breaking,

literally,

> whenever I walk, and my bones have felt broken head to toe.

Better

> today though, thank goodness.

>

> Sorry I missed the support group meeting in Indy Saturday the

10th, but

> was getting my first sponge bath from someone else in 14 months

(ick).

> I am going on ritalin on Tuesday (I was supposed to pick it up

two

> weeks ago after my chemo, but it ran late and the oncology desk

was

> closed). I used to take it and it was more gentle than Provigil.

If I

> can beat the fatigue without becoming a mean, chattering idiot I

will be

> much better. I really miss my periodic volunteer work. Please

tell me

> I can get that back. --- But chins up. If not, I have decided to

try

> to write/rewrite some articles/stories (I had my older son set up

my

> laptop and a printer by my bed. If anyone can get a 56k modem

card for

> a 1400cs Mac laptop, I would get a dial-up provider again and not

get so

> behind in my mail!!!!). I'm trying to stay out of depression's

grip --

> mostly by prayer and meditation. I am so glad the holidays are

over, as

> I am sure all of you are, too. So much pressure to navigate the

gift

> buying. What I do is cut out pictures from the Sunday paper ads

and

> paste them on papers with the store names and give my Mom my debit

card.

> She was great this year. I feel so sorry for her. She is really

> miserable living here -- she really is a loner. Soooooooo. I am

> praying to get so much better that she can move out without

guilt. I

> must admit, though, that for the past week she has had to do

everything

> for me. So much for independence!

>

> I love you all. Hope all of you that are facing increasing pain,

> frustration and disability can find the comfort that I do in this

group.

> I pray for you all in my own way. Healing, happiness and peace.

>

> Reneness

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[Guest guest]

Hey Guys, forgive me for butting in, but I just wanted you to know I was on as high as 25 mg of methotrexate and it didn't do anything for me.. but once again that's just me.. my ace level stayed over 200. I hope it helps you.. cause that was 9 tablets I took one day a week ...

Thanks,

[Guest guest]

,

Just FYI, I'm only taking the metho to fight the antibodies my system is

creating against the remicade. It's the remicade that is controlling (better

at first than now) my sarc. The remicade has been especially good at combating

the neuro symptoms. Plus it wiped out my subcutaneous tumors really well

with no recurrence.

Love you sweetie. Sorry I didn't make the chat Monday evening.

wrote:

Hey Guys, forgive me for butting in, but I just wanted you to

know I was on as high as 25 mg of methotrexate and it didn't do anything

for me.. but once again that's just me.. my ace level stayed over 200. I

hope it helps you.. cause that was 9 tablets I took one day a week ...

Thanks,

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Live Group Chat:-

Mondays & Fridays 10pm EST USA

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[Guest guest]

,

Just FYI, I'm only taking the metho to fight the antibodies my system is

creating against the remicade. It's the remicade that is controlling (better

at first than now) my sarc. The remicade has been especially good at combating

the neuro symptoms. Plus it wiped out my subcutaneous tumors really well

with no recurrence.

Love you sweetie. Sorry I didn't make the chat Monday evening.

wrote:

Hey Guys, forgive me for butting in, but I just wanted you to

know I was on as high as 25 mg of methotrexate and it didn't do anything

for me.. but once again that's just me.. my ace level stayed over 200. I

hope it helps you.. cause that was 9 tablets I took one day a week ...

Thanks,

~~~~ *** ~~~ *** ~~~ *** ~~~~

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Live Group Chat:-

Mondays & Fridays 10pm EST USA

http://www.elderwyn.com/neurosarcoidosis/chat.php

Message Archives:-

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[Guest guest]

Thanks so much, Deb, for you info on Metho. Seems to hit me the same, but

no runs yet.

Thanks (still very tired -- ritalin not helping today)

Debbie wrote:

Hi ,

According to my dr and others here on the board , I think

the "norm" is between 15 and 25 mgs a week. I was taking 15 since

Sept. then in November, he upped me to 20 because I wasn't having

much of a response. That's when he started talking about the

Remicade also. I usually take the metho on Sunday night and it

usually puts me down most of Monday. I can still get up and do

things here and there, but I get tired fast. I get nauseous with the

lovely "sarc headaches" and also a bit more all-over body pain

(legs, especially)so I just try and lay low most of Monday and go to

bed early. Tuesday, I still feel it a little , but not quite as bad

that's when the diarrhea may hit. (Remember what goes in, must come

out!) But Wed. I am back to "normal" or as close to normal as I'm

gonna get with Sarc.

Im sure everyone's different and has different experiences, but

that's what happens with me. HOpe that helps you out, good luck.

Maybe you can help me out if I ever start the Remicade!!

Luv, Debbie

> > > Aisha's Army Corps!

> > >

> > > Thanks for the cute card. Mean cold and horrific bone pain

> >

> > > bed for one week solid. Of course., I have over 300 messages

to

> > > read/weed. Love you all and hope you are having a happy

new

year.

> > >

> > > P.S. Immuno doc has me up to 10 mg of remicade and wants

to go

> > back to

> > > twice a month (contrary to Baughman's advice -- although

this

doc

> > has

> > > even more immuno research experience, so I'm going to try

to

trust

> > him

> > > -- for now). Also up to 10mg of methotrexate and will be

going up

> > more

> > > each week but they haven't told me the ceiling there. This

time I

> > did

> > > "feel" the immunosuppressant, i.e. I was sick as hell on

top of

> > the cold.

> > >

> > > Well, I have today and tomorrow until I get sick all over

again.

> > Had a

> > > chance to take a look at all my blood work since August.

Very

off

> > on

> > > Eiosonophils (?) and Neutrophils -- I don't remember which

is

way

> > high

> > > and which is way low, but it's been consistent. Other white

cells

> > are

> > > high and low but not severe. AST was off until November.

And, as

> > I

> > > suspected, I am now POST menopausal. Now I know why the

hot

> > flashes

> > > have permeated my days. Thank god for crushed ice!

> > >

> > > Sorry for going on -- just giving an update. I finally read

the

> > smaller

> > > pamphlets from the conference -- talked about fairly common

to

> > have sarc

> > > in joints and bones -- have felt like feet are breaking,

> > literally,

> > > whenever I walk, and my bones have felt broken head to toe.

> > Better

> > > today though, thank goodness.

> > >

> > > Sorry I missed the support group meeting in Indy Saturday

the

> > 10th, but

> > > was getting my first sponge bath from someone else in 14

months

> > (ick).

> > > I am going on ritalin on Tuesday (I was supposed to pick

it up

> > two

> > > weeks ago after my chemo, but it ran late and the oncology

desk

> > was

> > > closed). I used to take it and it was more gentle than

Provigil.

> > If I

> > > can beat the fatigue without becoming a mean, chattering

idiot

I

> > will be

> > > much better. I really miss my periodic volunteer work.

Please

> > tell me

> > > I can get that back. --- But chins up. If not, I have

decided to

> > try

> > > to write/rewrite some articles/stories (I had my older son

set

up

> > my

> > > laptop and a printer by my bed. If anyone can get a 56k

modem

> > card for

> > > a 1400cs Mac laptop, I would get a dial-up provider again

and

not

> > get so

> > > behind in my mail!!!!). I'm trying to stay out of depression's

> > grip --

> > > mostly by prayer and meditation. I am so glad the holidays

are

> > over, as

> > > I am sure all of you are, too. So much pressure to navigate

the

> > gift

> > > buying. What I do is cut out pictures from the Sunday paper

ads

> > and

> > > paste them on papers with the store names and give my Mom

my

debit

> > card.

> > > She was great this year. I feel so sorry for her. She

is

really

> > > miserable living here -- she really is a loner. Soooooooo.

I

am

> > > praying to get so much better that she can move out without

> > guilt. I

> > > must admit, though, that for the past week she has had to

do

> > everything

> > > for me. So much for independence!

> > >

> > > I love you all. Hope all of you that are facing increasing

pain,

> > > frustration and disability can find the comfort that I do

in

this

> > group.

> > > I pray for you all in my own way. Healing, happiness and

peace.

> > >

> > > Reneness

> >

> >

> >

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> > Live Group Chat:-

> > Mondays & Fridays 10pm EST USA

> > http://www.elderwyn.com/neurosarcoidosis/chat.php

> >

> > Message Archives:-

> > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> >

> > Members Database:-

> > Listings of locations, phone numbers, and instant messengers.

> > http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

> >

[Guest guest]

Hugs to you too, my sarc sis. I will try to make the chat tonight. It depends

on whether I go to synagogue or not. I have not been since last summer.

Sometimes it's because I have no winter dress that fits me, but usually

it's because evenings simply rag me out. Doesn't look like the dose of ritalin

I started Wednesday is going to carry my through the day. I take 10 mg in

am and 5 mg at noon. Temple is at 6:00. Maybe on Fridays I will take 10

mg at 2pm. So, who cares if I won't sleep? There's good TV late on Fridays

anyway.... (and a good chat group). And, BTW, While I was out doing a few

needed errands with mother on Tuesday (we had the extra time since the doc

just did a bone scan and no IV) -- she dropped me off at my favorite designer

resale shop while she filled my MTX, ritalin, and methadone scripts. I found

a great, elegant but funky patchwork dress (dark blue, mostly embroidered

silk and satin with some velvet. it's really long and very, very me!) the

best part is that it had been there awhile (it was a 20, so I expected it

to hang on me, now that I have lost weight, but it was a great fit -- didn't

fall off my tiny shoulders) I think it was missized (really, I'm not just

saying that to make me feel good), and that's why it had been there since

August. That meant I got 60% off the resale price.....$14.00!!!!! I was

ready to buy a similar dress online for four times that!

I also bought a great (also long) dk blue linen jumper with wooden buttons

(never been worn). I loved it because it has the back ties and will shrink

with me. Mom thought it was too plain, but I just see it as a great palette.

I can't wait to play with scarves and blouses. I still need a great blazer,

but those don't shrink with one as well, so I'll weight about twenty more

pounds for that. Last thing was a fun salt and pepper fleece V-neck sweater.

Both of those had been around awhile and both were also around $ 14.00.

I found a great purse, too, but it has 5 days to go before final markdown.

I'm going to send mom to get it later. They put my name on a list in case

it is still there at that date. Heck, I keep that place in business. I've

shopped there since 1994 and I was a size 6 dress. Any of you who visited

my house a year ago (all six of us with hubbies) may remember the pic of

and me on the entertainment center. He was in a tux looking strikingly

like Redford or JFK, and I had on this amazing tea-length brocade

dress with a crinoline (sp). It was cream on the top and black on the bottom.

The back had jeweled (fake diamonds on fake pearl) buttons and a fairy tale

big bow. My hair, which was waist-length at the time, was french-braided

down the back with a big black bow at the bottom. (The photo was from his

sister's wedding which was only a few months after we started dating and

two years before we married. It was also exactly one year before I got sick.)

Well, to make a long story longer, that dress was purchased at the same store

mentioned above, so the owner has seen me shop for size 6,8,12(pred skip),14,18(pred

skip), and 22. She's really delighted to see my face again (my moon face

is almost all gone). The other reason I associate that picture with our

little NS conference is that the picture made Stacey (who hadn't been sick

but a few months) very shocked and sad. I hope it no longer does. I am

fully confident that I will reduce back to a 12. My original goal had been

a 10 up to last Tuesday when the doc confirmed that I am post menopausal.

I NEVER knew that the conditioned caused one's breasts to INCREASE in size!.

No wonder my hips are, for the first time in my life, smaller (by five inches)than

upstairs! It makes buying suits and sets a real bitch (okay, I MAY sound

a tad like Bo when she complained about being a 12 upstairs and a 2

on the bottom), but when you are as fat as I am, it's hardly the same thing.

Don't feel alone, Stacey, or anyone else who has freaked about the weight

gain from pred or other meds. I had to have a year of therapy to help me

with my growing girth. Heck. I was a SMALLER size at 35 than I was at 17

(both were underweight, mind you). Best quote from her "Would you rather

be fat or flat on you back?" Best hard-hitting advice: Think of all the

people in your life whom you love dearly who happen not to be a Barbie (or

smaller, as I was) figure. Did their size affect your love for them? (I'm

sure it did not. In fact, it was the lovely cushions of my father's and

my grandmother's laps that I remember most fondly about early childhood).

And remember this. Every time you complain about your own weight or size,

you are disrespecting them! Boy has that worked!

I am super-duper lucky to have a hubby who has a weight problem. He never

knew he did until he quit playing rugby full time. When I met him he was

still playing part time. On the off-season (city and some college clubs

only play in the spring, whereas the chiropractic school teams (( he went

to Palmer on a half-scholarship for rugby)) he was starting to gain pounds,

so the two of us were working out together. (I was a fitness freak after

I quit studying ballet full-time). In fact, I was running three miles a

day right up to the day my brain went funny and my legs right after that!

stopped working out so much when I got sick, and when he started his

own practice he couldn't risk playing with the Indy team since he no longer

had disability insurance. (He started coaching in 96, though, and now coaches

his old rivals since he teaches at their high school!) Coaching doesn't really

keep him in shape, and since he put out his knee he hasn't even been running

daily. He did have surgery right at the beginning of holiday break, and

he is really hoping he can play with the men's team next year. I don't know

where he will find the time. He coaches freshman football in the fall and

rugby pre season started before the break. I do hope he can lose some (he

has gone from a loose 36 to a tight 40), as he is not as accepting of himself

as he is of me -- he always says I have a good reason, and he doesn't. Heck!

I'm just glad I didn't marry some hard body that would have dumped me after

I lost my cover girl looks. The only bad thing (which will perpetuate even

if I do lose weight) -- {ladies only} doesn't like large breasts,

and I truly did not have them when we met nor when we married. Ah, well

I know he loves me no matter what shape or size I am. He is a gem (even

if his Irish temper drives me and my mom crazy -- he always gets over it

quickly, and I have learned to also, even though it took a lot of time!),

as anyone who has met him knows!

So, cross your fingers for temple tonight. and Hayden have agreed

to go, but Mom won't. Hell, I think if I got her tickets to go see her favorite

musician, if it had to be with she wouldn't go. Just think of our

house like "Everybody Loves " only I'm Ray, and is his wife,

and my mom is just as bad as Ray's mom but she lives with us, taking care

of her "baby" (I am the youngest of four who always kissed up to the parents

and still does) and bad mouthing the spouse whenever he is gone, and ignoring

him whenever he is here. I finally put my foot down with both of them. They

each bring their bitching about the other to me. I said it had to stop and

if there were any problems that needed fixing, they would have to discuss

it with each other. It only worked a short while. I've already had an ear

full this morning. The worst part is that everything that bugs my mom bugged

me early in our marriage, but with good counseling I learned that marriage

is kind of like raising a teenager -- you pick your battles and learn that

your tastes and preferences are not necessarily law! Yes, my mom and I are

both stackers, and is a spreader. At first it caused us many fights

since I was still able to do some housework, and he is a slob. I stacked

up his important papers, and it took him forever to find them. I learn to

live with his spreading, and I cut down on my piles around the house. I

cut down so far that the only things I stack now are magazines (one hint

for any clutter-bugs... I put up lamps in my family room that attach to the

wall and have swinging arms. That eliminated the need for end tables, which

only end up as junk magnets in my house!), and all the mail posted to my

husband (except my EOB's, which I have learned to recognize).

NOTICE TO ANYONE MARRIED TO A SLOB! Someone who knew really well

and had the misfortune (oops) to ride in his pick-up (I thought it shocking

and hilarious that a doctor, albeit a chiropractor, would drive a pick-up)

knew how dirty and messy a person could be (I won't even sit in it. We ALWAYS

take my van, even when I don't need my scooter or walker); that person gave

me an article: "How to Marry a Slob." I have it filed still, if anyone

wants me to give the name and issue of the rag it came from. One blessed

hint. Give the guy a corner or a room where he can be as messy as he wants.

Well, it didn't work entirely, but it has helped immensely. Oddly, he is

almost manic about keeping the kitchen clean, but the tops of his dresser

and night table are hazard zones and until yesterday the dust was at least

1/4 inch thick (no kidding; ask Rose.) To his favor, his pile of clothing

on the floor on his side of the bed has shrunk, and he does pull out the

"really dirty" clothes every so often (mom does the laundry now, and refuses

to look through his "floor clothes.") is like Bill Murray in Ghost

Busters 2 about laundry. Very much a guy. Again, in his defense, he was

a week shy of his 36th birthday, and he had never even lived with a woman,

let alone been married (no kiddies, either, although it was my two kids who

proposed to him...). I have learned, sometimes the hard way, that there

are many more things that are important in a person's character than how

tidy they are. He is generous, caring, affectionate, and would give the

shirt off his back to a person in need. We have an unwritten rule that we

do not have to check with each other when inviting anyone to stay the night

if they need to. He brings me flowers (and even brings them to mom when

I remind him), buys me decadent treats, and holds me for as long as I need

it when I am in pain. The only thing I'm still working on, though, is that

he always seems to turn my formal dining room into his office. Luckily,

though, he has given up using my old powermac in the dining room, and as

soon as our remodeling is done in the living room (he is almost done with

the most awesome built-in oak shelves and cabinets) he will move his rolltop

desk back in there and I will have my dining room back -- he promised!

Anyone have an idea to whom I should donate a nice souped-up PowerMac? I

used it when I worked at home for Macmillan, transferring books from Pagemaker

to ebooks. It has a Zip drive (scsi) but I'm keeping the printer to use

with my laptop 1400cs, which I saw was going for $75 on Ebay (we paid $650

for it four years ago). Arghhh! Computers depreciate faster than cars now!

Ikes!

Well, I've really wandered around the block this morning, and everyone.

Guess the ritalin is bringing the words back.

Now:::::: on to the poetry!

Love and weller, oy, and "don't mess with this broad..."

Reneness

wrote:

Hey ... I knew you had been doing good on the Remicade,

You've been my poster child..(hmmm) woman for awhile now.. arguing that you've

done so well on it...but I also know that they add mtx sometimes too.. but

I didn't know why.. thanks for that info... Hang in there , we are all

glad your back...

Hugs,

t

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Mondays & Fridays 10pm EST USA

http://www.elderwyn.com/neurosarcoidosis/chat.php

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[Guest guest]

I'm going to have this tattoed on my arm; excellent advice, o wise & wonderful goddess! Humble Rose

marriage is kind of like raising a teenager -- you pick your battles and learn that your tastes and preferences are not necessarily law!

[Guest guest]

Everyone, and I mean everyone I have been related to or am now closely related

to decided that Friday was " is my doormat day" so, even though I had

the potential for doing some nice and/or fun things, the stress put me right

back in bed by afternoon. Yesterday (Sunday) I went shopping and to a movie

with my best friend here in the city, while our spouses and sons watched

the Colts lose their ticket to the Super Bowl (neither of us women could

have given a damn). The shopping was great, considering I have gone shopping

all of two days since October.

I purchased a great Stone Mountain handbag to replace my favorite ("well-loved,"

as the clerk so nicely put it) handbag. I have been hunting forever. Mom

just bought me (per request and several trips -- I'm so bad) a pair of Dr.

Scholl's clogs (I am so tired when I have to go in for my IV that I wanted

the world's easiest shoes to put on. My immuno has me taking my Metho the

night BEFORE my remicade, so I'll be really ill when I go in on the 27th.

I do know that the new chemo wing has rooms with beds -- I'm sure I'll need

one. What I'm worried about is walking up with my walker. Mom (who'll be

taking me) is too feeble to push fat old me in a wheel chair, and presently

my electric scooter needs a new battery. We also need to transfer the lift

to the new van (I have been doing just great with my fancy walker with a

seat and basket). Hmmmmm. Sounds like a good motivator for my husband.

I wish the company would make a housecall to change it -- they came out

when they installed it in my old minivan which is presently also on the fritz

but which will be going to my sixteen year old. (whew)

The other item I purchased was gorgeous (both were 40% off). It has a khaki

background with chestnut, black, and turquoise markings that look like chinese

characters (I hope I'm not going to be wearing some vulgar Anti-American

anthem on my person!) It is also decorated with beautiful turquoise and

black long beads. The collar is chinese, and the jacket has those great

chinese closures -- I don't know the names -- a strap of fabric slings over

a bunched-up cloth button. (I am particularly inarticulate this afternoon).

The chestnut matches my clogs (and an old but great pair of lace up boots)

and my new purse.

Did I mention I'm fanatic when it comes to colors mathing? My fellow teachers

used to make public examinations of my outfits each day -- belt, shoes and

purse matching (of course I have blue, black, o.d. green and light brown

bags and shoes from those days nearly a decade ago, but they rarely get used

-- i'm just now back to my regular shoe size after two years of edema!),

and, of course, socks and hair bows or closures matching the outfit (I had

waist lenght hair when I took ill).

I especially hate matching blacks and blues. I know there are a million

names for shades of blue, but what about black?? Ink black, grey black,

coal black. Arggghhh.

Well, that's all behind me. Well, sort of. Okay, it's not, but I hardly

go out. ALL RIGHT. I ADMIT IT. Hubby brought home my first new housecoat

in two years (a beautiful emerald green with twisted rope piping

in navy, green, and garnet). Problem? All of my houseslippers, including

the great clog-like ones Mom got me in November are BLUES. So... Mom to

the rescue again. She says they have the same clog slippers on sale in green

for 2 bucks. I'M SO BAD!!!!!

Now if I could just get my home as coordinated as my wardrobe. -- I'm trying!

After the shopping stint, we went to see Cold Mountain. It was good

but gory and sad. Neither of us were prepared and came out of it very blue.

Today is okay. Zak was already here when I got out of bed (the housekeeper

did show up today). Hayden had two friends sleep over after the game, and

they all left about an hour ago. Zak is sacked out on the couch and

is quietly (hoorah) paying bills. I am ordered to "take it easy." We are

waiting to wake Zak up in a few minutes and see if he'd like to go watch

the loons at the resevoir (one of the things I like to do on my limited good

days). Zak and spent the morning filling out graduation order forms

(cap, gown, invitations, etc.). is being a real sport paying for

all this when Zak won't even sleep (well, at night anyway) at our house anymore.

I just really, really dislike (i don't like to use that other four-letter

word, but it fits) his real dad who is flying Hayden to the Keys for Spring

Break but won't even put a new windsheild on his dependent son's car. Actually,

I told him that plane tickets or no, Hayden would be staying home in April

if Zak doesn't get a safe car within a month. (I put four new tires on it

for Hanukkah)

Ah, the ins and outs of familyhood. I know I am very lucky. I know it and

thank God every day. But this damn disease does not ever get my thanks.

especially when I think of all of you. If it were ever in human form, I'd

get us together and kick it's sorry ass out of the Milky Way. And that's

a promise!

I'll try to stop by this evening to chat. The ritalin seems to be doing

a pretty good job when the chemo doesn't knock me on my butt. Sorry this

was so long, but I promised I'd send a chatty and cheerful letter when I

was first able. And this is it.

Take care and all of you.

Reneness, Queen of the color wheel.

wrote:

Hey , we would love to have you at chat but synagogue is

certainly more important.. You take care of yourself and join us when you

can... I'm sooo glad your feeling better and able to be online some....

Hugs,

~~~~ *** ~~~ *** ~~~ *** ~~~~

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[Guest guest]

Wow, you're amazing too!! This group has some of the nicest, most fun folks on it of anywhere I've ever been!

Thanks!

Love,

Jeri

[Guest guest]

Wow, you're amazing too!! This group has some of the nicest, most fun folks on it of anywhere I've ever been!

Thanks!

Love,

Jeri

[Guest guest]

Wow, you're amazing too!! This group has some of the nicest, most fun folks on it of anywhere I've ever been!

Thanks!

Love,

Jeri

[Guest guest]

, I hope you got out to temple with your mom and had a good evening last week. Your shopping trip sounded like fun. I haven't gone shopping in a couple of years and I am going to MAKE myself get out even if I'll have to pay for it later. I'm sick most of the time anyway so why not have a good reason. I was bound and determined to remember the name of that closure you mentioned...a frog closure...right? I could see it in my mind and it made me so mad I couldn't remember it. I have a college degree in Fashion Merchandising so I should remember it but the mind just ain't workin' too well especially this week. The last couple of days I had some shakings ...well, that's what I call them...my hands and my head. I felt so crappy that I didn't even want to call the doctor but that is another thing I'm gonna have to make myself do. Today I was talking to my son Josiah and my head just took off on this

weird shaking thing and I started crying and asked him to leave the room and shut the door. I was so embarrassed and scared. and really really pissed!! I am so sick of going to doctors...but, yeh, I know...I'll have to go and it just pisses me off. I'm in my period week and it is really hitting me hard this month. Hey they sell Stone Mountain bags on QVC...at some pretty good prices...when they have a special. I have a Zac, too. He'll be 22 this March. I have Zachary and Josiah, 19. As for matching colors..wahahah...if you buy enough things in that color...something will have to match or else you have a reason to go shopping again. It's a win win situation. LOL Besides isn't shopping listed as an aerobic exercise. It is if you do it the right way. I love Kidman but I'm not up to sad and gory right now. But I 'll see that movie

when I'm in a better mood. The buzz about it is very good. I felt like hitting my husband with a stick earlier today. When I am having a really bad day(s( or week(s)...he seems to be pushin all the wrong buttons and I just want to be alone. My husband has never told me to just take it easy....I'd probably go into shock. He is very indecisive and is always asking me questions..no matter how sick I am... Once he brought the checkbook into the hospital for me to balance and I had just been moved from ICU. Believe me some of his problems are far removed from what nationality he is. Since I've gotten sick and can't do the things I used to do...he is lost. And he can't catch up. BTW I thought I had a menorrah but it has 9 candleholders...Did you say on the survey that that is called something else...why the difference and what is each one used for? IN 2002 we celebrated a

learning version of Hanukkah.....and read off prayers nightly. Forgive stupid questions please... And don't feel bad...I think almost everyday is is a doormat Day. I don't have the energy to shake it off right now. I'm sure I'll be feeling better tomorrow. I'll pray to anyhow..... soft color matched hugs hehehe S.rkelty wrote:

Everyone, and I mean everyone I have been related to or am now closely related to decided that Friday was " is my doormat day" so, even though I had the potential for doing some nice and/or fun things, the stress put me right back in bed by afternoon. Yesterday (Sunday) I went shopping and to a movie with my best friend here in the city, while our spouses and sons watched the Colts lose their ticket to the Super Bowl (neither of us women could have given a damn). The shopping was great, considering I have gone shopping all of two days since October.I purchased a great Stone Mountain handbag to replace my favorite ("well-loved," as the clerk so nicely put it) handbag. I have been hunting forever. Mom just bought me (per request and several trips -- I'm so bad) a pair of Dr. Scholl's clogs (I am so tired when I have to go in for

my IV that I wanted the world's easiest shoes to put on. My immuno has me taking my Metho the night BEFORE my remicade, so I'll be really ill when I go in on the 27th. I do know that the new chemo wing has rooms with beds -- I'm sure I'll need one. What I'm worried about is walking up with my walker. Mom (who'll be taking me) is too feeble to push fat old me in a wheel chair, and presently my electric scooter needs a new battery. We also need to transfer the lift to the new van (I have been doing just great with my fancy walker with a seat and basket). Hmmmmm. Sounds like a good motivator for my husband. I wish the company would make a housecall to change it -- they came out when they installed it in my old minivan which is presently also on the fritz but which will be going to my sixteen year old. (whew)The other item I purchased was gorgeous (both were 40% off). It has a khaki background with chestnut, black, and turquoise

markings that look like chinese characters (I hope I'm not going to be wearing some vulgar Anti-American anthem on my person!) It is also decorated with beautiful turquoise and black long beads. The collar is chinese, and the jacket has those great chinese closures -- I don't know the names -- a strap of fabric slings over a bunched-up cloth button. (I am particularly inarticulate this afternoon). The chestnut matches my clogs (and an old but great pair of lace up boots) and my new purse.Did I mention I'm fanatic when it comes to colors mathing? My fellow teachers used to make public examinations of my outfits each day -- belt, shoes and purse matching (of course I have blue, black, o.d. green and light brown bags and shoes from those days nearly a decade ago, but they rarely get used -- i'm just now back to my regular shoe size after two years of edema!), and, of course, socks and hair bows or closures matching the outfit

(I had waist lenght hair when I took ill).I especially hate matching blacks and blues. I know there are a million names for shades of blue, but what about black?? Ink black, grey black, coal black. Arggghhh.Well, that's all behind me. Well, sort of. Okay, it's not, but I hardly go out. ALL RIGHT. I ADMIT IT. Hubby brought home my first new housecoat in two years (a beautiful emerald green with twisted rope piping in navy, green, and garnet). Problem? All of my houseslippers, including the great clog-like ones Mom got me in November are BLUES. So... Mom to the rescue again. She says they have the same clog slippers on sale in green for 2 bucks. I'M SO BAD!!!!!Now if I could just get my home as coordinated as my wardrobe. -- I'm trying!After the shopping stint, we went to see Cold Mountain. It was good but gory and sad. Neither of us were prepared and came out of it very blue.Today is okay.

Zak was already here when I got out of bed (the housekeeper did show up today). Hayden had two friends sleep over after the game, and they all left about an hour ago. Zak is sacked out on the couch and is quietly (hoorah) paying bills. I am ordered to "take it easy." We are waiting to wake Zak up in a few minutes and see if he'd like to go watch the loons at the resevoir (one of the things I like to do on my limited good days). Zak and spent the morning filling out graduation order forms (cap, gown, invitations, etc.). is being a real sport paying for all this when Zak won't even sleep (well, at night anyway) at our house anymore. I just really, really dislike (i don't like to use that other four-letter word, but it fits) his real dad who is flying Hayden to the Keys for Spring Break but won't even put a new windsheild on his dependent son's car. Actually, I told him that plane tickets or no, Hayden would be

staying home in April if Zak doesn't get a safe car within a month. (I put four new tires on it for Hanukkah)Ah, the ins and outs of familyhood. I know I am very lucky. I know it and thank God every day. But this damn disease does not ever get my thanks. especially when I think of all of you. If it were ever in human form, I'd get us together and kick it's sorry ass out of the Milky Way. And that's a promise!I'll try to stop by this evening to chat. The ritalin seems to be doing a pretty good job when the chemo doesn't knock me on my butt. Sorry this was so long, but I promised I'd send a chatty and cheerful letter when I was first able. And this is it.Take care and all of you.Reneness, Queen of the color wheel. wrote:> Hey , we would love to have you at chat but synagogue is > certainly more important.. You take care of yourself and join us when > you can...

I'm sooo glad your feeling better and able to be online > some....> > Hugs,> > >>>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> Live Group Chat:-> Mondays & Fridays 10pm EST USA> http://www.elderwyn.com/neurosarcoidosis/chat.php>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>>

[Guest guest]

,

I'm glad I wrote when I did, since after that Monday night (I take my

methotextrate on Mondays because my once a month Remicade treatment is on a

Tuesday) I haven't been able to get out of my bedroom except for an occasional

few hours on a couch in either my family room (The couches are less comfy, but

the fireplace and the porch views are spectacular) or my living room where the

comfy couch resides but which has been in disarray since last summer. I'm not

much of a decorator, and since I seem to be getting out only about one day a

month or so (except for doctor visits and chemo), it's just as well that

has been very slow at finishing the built-in bookcases/cabinets. He began the

redecorating by purcasing two large and two small lamps which all match in a

Chinese floral style. As for me, I picked out a nice royal blue paint which now

covers about 1/2 the room. We still have up the medium chambray curtains and I

bought a dark denim slipcover for the couch. But even though it's still a mess

and oh-so-blue I never get down in the dumps -- hey! anything beats staying in

my bedroom 24/7/365!

Yesterday (my first double whammy) was bad, but not as bad as I had feared. The

mtx I took Monday hit me just after I made it to the fifth floor chemo ward -- I

was afraid I wouldn't be able to dress myself or anything -- I've been simply

aweful for the entire week before (I found out why -- I'll tell you later), but

I was even able to sponge bathe and push my stuff in a wheelchair from the

garage to the middle of the hospital. It was weird, though, to get so ill just a

few minutes before the more potent chemo! The best part of such a bad day is

that yesterday was a snow day and I found out as I was finishing dressing that

my hubby was home and was planning on taking me (the big new van has a bed in

the back, and I lay in it all the way home!). He was soooooooo sweet to me

while I was having my infusion. He held my hand, constantly fetched ice chips

for my nausea, and tried to give me the big-eyed dreamy smiles he used to look

at me with before I got sick. Last evening he still waited on me hand and foot.

He hasn't been that kind since I was in the hospital from a staph infection

turned to sepsis when I was on chemo (cytoxan) before.

Today was amazingly better than the last three weeks. Last week was megabad

because I stopped taking my arthritis meds because of the pharmacy warning about

metho and NSAID's (the doc let me start taking them again last night --- I would

have called but I didn't even have the strength for that. The other reason I

have been feeling bad is because my AST level was up to 87 (45 is the cut-off

for the accepted range) I had been in the thirties since they'd increased my

remicade in November, but even before that it has never been over 60. BTW, I'm

still in bed. Hubby finally relented and is letting me use his new G4 laptop

with an internal modem and earthlink. I spent most of the day setting the

machine up and trying to figure out how to use a new dial-up (I have a cable

modem on my computer).

Sorry your hubby is still being so insensitive. My first husband was like that.

I was hospitalized with serious pneumonia for three weeks and I still had to

arrange for all the babysitting from the hospital phone. I really do feel for

you.

I know from experience that my energy today is merely from the premeds which

include decadron. Tomorrow it will be back to the old ick. I'll try getting on

from this computer, though, as I still have 400+ emails to read!

take care,

--

Life is a menu! Why not go gourmet!

[Guest guest]

Hi ,

I am so sorry to hear that you are doing worse. You want be down long because you are such a fighter. I took Remicade, and it didn't help me that much. I am on methotextrate and it seem to be helping until last week. It was a really bad week and still not up to par. I just take it as it come and hope tomorrow will be better. The methotextrate makes me worst right after I take it too. Hang in there and get up as much as you can.

Love to ya,

[Guest guest]

Hi ,

I am so sorry to hear that you are doing worse. You want be down long because you are such a fighter. I took Remicade, and it didn't help me that much. I am on methotextrate and it seem to be helping until last week. It was a really bad week and still not up to par. I just take it as it come and hope tomorrow will be better. The methotextrate makes me worst right after I take it too. Hang in there and get up as much as you can.

Love to ya,

[Guest guest]

I too was told if I did the Remicade study, I would have to be on

Methotrexate and Plaquanil both, which I am.

Marla

Re: Reneness update and apology for absence

> Hi guys, Sorry to butt in. But they plan on keeping me on the

> methotrexate when and if I start Remicade. Most of the literature I

> have read recommends this. Debbie

>

>

> > Hey ... I knew you had been doing good on the Remicaide,

> You've been my

> > poster child..(hmmm) woman for awhile now.. arguing that you've

> done so well

> > on it...but I also know that they add mtx sometimes too.. but I

> didn't know

> > why.. thanks for that info... Hang in there , we are all glad

> your back

> > ..

> >

> > Hugs,

> > t

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://www.elderwyn.com/neurosarcoidosis/chat.php

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

[Guest guest]

I too was told if I did the Remicade study, I would have to be on

Methotrexate and Plaquanil both, which I am.

Marla

Re: Reneness update and apology for absence

> Hi guys, Sorry to butt in. But they plan on keeping me on the

> methotrexate when and if I start Remicade. Most of the literature I

> have read recommends this. Debbie

>

>

> > Hey ... I knew you had been doing good on the Remicaide,

> You've been my

> > poster child..(hmmm) woman for awhile now.. arguing that you've

> done so well

> > on it...but I also know that they add mtx sometimes too.. but I

> didn't know

> > why.. thanks for that info... Hang in there , we are all glad

> your back

> > ..

> >

> > Hugs,

> > t

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://www.elderwyn.com/neurosarcoidosis/chat.php

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

[Guest guest]

-- Re: Re: Reneness update and apology for absence

Hi , I am so sorry to hear that you are doing worse. You want be down long because you are such a fighter. I took Remicade, and it didn't help me that much. I am on methotextrate and it seem to be helping until last week. It was a really bad week and still not up to par. I just take it as it come and hope tomorrow will be better. The methotextrate makes me worst right after I take it too. Hang in there and get up as much as you can.Love to ya, ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

-- Re: Re: Reneness update and apology for absence

Hi , I am so sorry to hear that you are doing worse. You want be down long because you are such a fighter. I took Remicade, and it didn't help me that much. I am on methotextrate and it seem to be helping until last week. It was a really bad week and still not up to par. I just take it as it come and hope tomorrow will be better. The methotextrate makes me worst right after I take it too. Hang in there and get up as much as you can.Love to ya, ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hey ,

I take methotrexate too and it seemed to be helping at first but now it seems like nothing is helping. I'm on a 6 weeks taper of pred orally and its not helping either and the neuro surgeon is pushing to operate on my neck and at this point i'm not sure if surgery is a good idea especially until i hear from the ID docs at Vanderbilt.

Confused and foggy headed i am these days.......man oh man. Think i need a break.

Hope you feel better soon.

Love and prayers,

Jan

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.542 / Virus Database: 336 - Release Date: 11/18/03

[Guest guest]

Hey ,

I take methotrexate too and it seemed to be helping at first but now it seems like nothing is helping. I'm on a 6 weeks taper of pred orally and its not helping either and the neuro surgeon is pushing to operate on my neck and at this point i'm not sure if surgery is a good idea especially until i hear from the ID docs at Vanderbilt.

Confused and foggy headed i am these days.......man oh man. Think i need a break.

Hope you feel better soon.

Love and prayers,

Jan

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.542 / Virus Database: 336 - Release Date: 11/18/03