Re: Chapter 3

[Guest guest]

this is kinda how i feel now too with my company questioning my disability.

what do you mean go back to work? how can i? even my rheumi yesterday

mentioned how the meds aren't working and almost sounded like she was

questioning again, it was just wierd. kathy in il

[Guest guest]

Hi Friends...I saw my rheummy today who was DELIGHTED with my RA

improvement since starting Remicade. He was amazed at how " slender " and

pain-free my hands are. The swelling I've had for years is almost gone.

He did some blood work as usual (I'm anxious to see if my SED rate is

down from 87 - what it was the day prior to 1st Remicade.)

One thing he said surprised me...he said he did not think it necessary

for me to go off Remicade & Metho. prior to surgery...he said if I was

on steroids he'd feel differently. I always thought you had to go off

these drug prior to surgery. Any thoughts or information? He also said

that some surgeons don't necessarily believe in the validity of RA -

that some think it is more psychosomatic, therefore wanting to eliminate

RA drugs prior to surgery. Has anyone hard this before??? I, like many

of you, have carried many different diagnoses over the years before they

settled on RA, psoritic arth. and fibromyalgia (including sero-negative

lupus, mixed conn. tissue disease, chronic fatigue syn., etc.) How would

a Dr. be able to deny RA when he sees swollen joints, redness and/or

pain, and sky high SED rates?

The neurosurgeon wrote out a prescription for Physical Therapy 3 x

weekly for a month. I have gone twice, Then the PT told me today that

there was nothing he could do to alter the neurologic problem, so just

keep up my exercises, take good care - goodbye! I see my primary care

next week, and will ask her to refer me back to the neurosurgeon.

I'm sorry if I seem a little flustered today...it just seems like some

of the info I'm getting from the medical profession is contradictory.

Thanks for listening. God bless you all for your kindnesses

Hugs of Hope....

Tess.

[Guest guest]

Dear Kathy...I'm sorry things seem discouraging right now. I extend my

hand in friendship & hope...hold on when the going is rough.

Hugs of Hope...

Tess

[Guest guest]

thanks tess, i guess i just never imagined that getting long term disability

from work would be harder than getting social security disability. i also

have always been the one to imagine the worst case scenario, then when it

happens it is not as bad i guess, but i put myself through an awful lot of

unnecessary stress. which is probably not a good thing. i am tired and sore

from cleaning, today i have stripped my bed. then i am going to sweep and mop

the kitchen floor. take a shower, go to counseling. then come home, clean the

bathroom and bake a cake for my party tomorrow. my son said he would dust the

living room and vacuum tonight after work. oh well guess my " lounging time

is done and i'd better get my butt in gear. wish you all could come!!! kathy

in il

[Guest guest]

Tess, no need to apologize about feeling flustered. Under the

circumstances, it's a normal reaction.

Sorry about your experience with the therapist. Maybe he could have

given a more thorough explanation of his reasoning for bidding you

adieu. Perhaps he was just trying to save you the trouble and expense

related to coming in if he thought it wasn't really going to help you

further. Hard to say.

Surgeons choose to stop certain medications before a procedure for a

great many reasons, but that's the first time I've heard that one

reasons could be that some surgeons may consider RA a psychosomatic

illness. If you ever have a surgeon who believes that, run away from him

or her very fast!!! I wouldn't trust such a surgeon.

Some of the big reasons for stopping some DMARDs prior to surgery are

worries about infection, wound healing, and stress on the kidneys.

Unfortunately, there is not much data nor consensus about any of these

agents as they relate to surgery. Too, since every person has a unique

set of problems and meds, the surgeon and the rheumatologist should

discuss the perioperative medication strategy on a case by base basis.

In addition, Remicade is very new, so nobody can say with any certainty

what the best approach is. I will post a couple of links on this topic

separately if I can find anything that may be helpful.

I know this is all frustrating, Tess. Sorry. Hang in there.

Re: [ ] Chapter 3

> Hi Friends...I saw my rheummy today who was DELIGHTED with my RA

> improvement since starting Remicade. He was amazed at how " slender "

and

> pain-free my hands are. The swelling I've had for years is almost

gone.

> He did some blood work as usual (I'm anxious to see if my SED rate is

> down from 87 - what it was the day prior to 1st Remicade.)

>

> One thing he said surprised me...he said he did not think it necessary

> for me to go off Remicade & Metho. prior to surgery...he said if I was

> on steroids he'd feel differently. I always thought you had to go off

> these drug prior to surgery. Any thoughts or information? He also

said

> that some surgeons don't necessarily believe in the validity of RA -

> that some think it is more psychosomatic, therefore wanting to

eliminate

> RA drugs prior to surgery. Has anyone hard this before??? I, like

many

> of you, have carried many different diagnoses over the years before

they

> settled on RA, psoritic arth. and fibromyalgia (including

sero-negative

> lupus, mixed conn. tissue disease, chronic fatigue syn., etc.) How

would

> a Dr. be able to deny RA when he sees swollen joints, redness and/or

> pain, and sky high SED rates?

>

> The neurosurgeon wrote out a prescription for Physical Therapy 3 x

> weekly for a month. I have gone twice, Then the PT told me today

that

> there was nothing he could do to alter the neurologic problem, so just

> keep up my exercises, take good care - goodbye! I see my primary care

> next week, and will ask her to refer me back to the neurosurgeon.

>

> I'm sorry if I seem a little flustered today...it just seems like some

> of the info I'm getting from the medical profession is contradictory.

> Thanks for listening. God bless you all for your kindnesses

>

> Hugs of Hope....

>

> Tess.

[Guest guest]

Hi ...thanks for the information and support. I will continue to

ask questions and do research. I appreciate all your hard work, as well

as your encouragement.

Hugs of Hope...

Tess

[Guest guest]

Tess,

My prayers for you won¹t stop. You¹re one step closer to getting this over

with. The waiting is the hardest part. Sometimes I think they should just

do surgery right away so we don¹t stress for weeks waiting. Glad you got

such a sweet doctor.

Hugs,

a

On 6/5/02 11:22 PM, " Tess_St_Pierre@... " <Tess_St_Pierre@...>

wrote:

> Hi...Had my pre-op today...now my ENT is doing the tonsillectomy,

> uvulopalatepharyngoplasty, and a septolasty. I asked him if he'd do a

> nose job while he's at it cause I've always tought my nose was too big

> but he said, " You DON'T need that! " : )

>

> When looking at my throat again, he said " It looks like you've got 2

> ping pong balls in your throat. Let me at them!!! " . My insurance will

> only pay 2/3 of the cost...he's doing the rest pro bono. He is a kind

> man, and I am very blessed. I may only have to stay 1 night if I do ok.

> It's scheduled for Tuesday, June 11 @ 11:30 am Pacific time.

>

> My roller coaster is slowing down, but please don't stop praying.

>

> Love & Hugs to All...

>

> Tess

>

>

>

[Guest guest]

Hi Tess,

Well, it looks as though your ordeal is going to be winding down soon for

you. a is right, the waiting is the pits. We should all be like our

pets. Take em to the vets, get a shot, do the procedure and not know from

nothing. Even in the olden days, they would admit you a day before, give a

healthy sleeping pill the night before, wake you up the next morning and off

to the OR you went and then after the procedure was over back to your room

for NICE drugs and then you could go home at your leisure the next am. Oh

those were the days!!!! I guess their statistics show that the insurance

company can save money this way, but how many of us really sleep the night

before surgery and then if like you, the surgery is at 11:30 am, have to walk

around the house and not eat or drink anything (without temptation) while

doing our normal routine and then they rush us out as soon as one eye is open

so that we don't linger in the out patient unit! Kinda gives you the warm

and fuzzies. I wonder if they also keep statistics on how many of us come

right back thru the front door of the emergency room upon discharge due to

inadequate pain control, intractable vomiting, persistent bleeding or failure

to adequately wake up from the anesthesia. I, for one, have been a member in

each of those clubs!

OK, enough about that. It sounds like you have " kissing " tonsils. My oldest

daughter had that. I am sure that everything will go just fine on Tuesday

and we will all have our candles burning for you and prayers in our hearts

going up to God. I am sure that once this is all over, you will wonder why

you waited so long to have it done. The doctor sounds like a great surgeon

and a nice man. So many great doctors are really lousy human beings. You

are very fortunate. He knows that you are a Mom and much needed in

everyone's life. That is what I tell my kids when I have to have all these

surgeries. Doctors don't let anything happen to Moms cause they know their

kids need them. Of course, my oldest is the exception. One night I was

really really sick and said to the two younger daughters, " Gee if something

happens to me, do you think Daddy will remarry? " They said oh no, Mom, don't

talk like that, yadda, yadda, yadda. My oldest one pipes up from her room

and says that one of the check-out ladies at the supermarket that she works

at, has her eye on Ron. So I guess out of sight, out of mind! I guess my

side of the bed won't stay cold too long if something happens to me. Kinda

makes me feel all warm and fuzzy....NOT! I guess when they start measuring

my shoes and clothes, I should start to worry. LOL I guess I now know how

to shop for Christmas accordingly!!!!!!

You just need to hang in there for a few more days and then this will be

behind you. I am sure that once most of the healing is complete, you will

feel like a new person. Let me know who you turn into!

Have a good evening and it sounds like you did a good job shopping for some

pretty lingerie. Did you get it on line or in the store? Nothing makes me

feel better than a nice piece of lingerie. When the going gets tough, the

tough go shopping! Words to live by!!!!!!!!

Oh BTW, thanks so much for your encouraging words and prayers for me during

my ordeal. This disease keeps you firmly planted on a constant roller coast

ride of various problems. Good friends like you, are the lemonade stands

along the road of life. I am happy to call you my friend.

Get some rest, your body will thank you.

Gentle, tender, angel hugs,

Debs in FL