to Carol

[Guest guest]

Carol,

Sorry for the post surgery comment....I had the date of your surgery wrong,

you still have a few more days ahead of you before your tied to a bed.

Haven't those ideas everyone submitted been great, I thought the suggestion

of those packages of cleansing cloths especially good. One with a pleasant

scent would be so refreshing.

One thing I always take is my own personal preferred body and face lotions. I

use Aveeno, so it's not highly scented and I don't think they would object to

that, my hospital's never have. I have a tendency to get very dry, especially

when I'm staying in bed. My husband also brought me books on tape (cd's)

when I was in, and I really liked those because I couldn't read (vision

problems). It was very relaxing to lie there and " listen " to a book. If you

enjoy

reading, or that type of thing, you can get excellent new releases at your local

library. For some reason, I'm never able to watch or absorb much TV while in

the hospital, yet I could get into the book cd's.

Please post an address that we can send mail to.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI

Note: All comments or advice are based on personal experience or opinion

only, and should not be subsituted for consultation with a medical

professional.

[Guest guest]

Carol,

I am NOT in favor of this drug I will talk about because my pancreatic

specialist said drugs in this class could/would affect the pancreas

adversely, but I understand some other people on this board are on it.

I am speaking of Provigil. I have thyroiditis and most probably Chronic

Fatigue Syndrome. My NP has prescribed this for me. I can't seem to

stay awake unless I am constantly moving and am so tired I look like I

haven't slept in days and feel the same way too. I also have MAJOR

joint pains as well. Along with all the symptoms and pain from my CP and

SOD.

I have weighed the options and have decided that if I COULD NOT take

prescription or over the counter diet pills because they could/would

affect the pancreas in an adverse way, then why should I be able to take

this drug? After all, it is an amphetamine drug usually prescribed for

people with Narcolepsy that fall asleep at the most in opportune times

such as driving a vehicle. Mind you, it isn't my specialist prescribing

this. It is my NP who doesn't have a clue about CP.

This is a list of the side effects. Notice the GI disorder one. As you

know CP falls under GI problems, of course. And yes, they are reporting

only 1% problems so you may feel differently about this than I do. I

feel, as well as many others on the board, that you should be as

informed of the drugs you are taking as possible. The link I found this

on is www.RXLIST.com

Events reported by at least 1% of PROVIGIL-treated patients and that

were more frequent than in the placebo <javascript:defwindow('placebo')>

group <javascript:defwindow('group')> are included; incidence is rounded

to the nearest 1%. The adverse experience

<javascript:defwindow('experience')> terminology is coded using a

standard <javascript:defwindow('standard')> modified COSTART Dictionary.

Events for which the PROVIGIL incidence

<javascript:defwindow('incidence')> was at least 1%, but equal to or

less than placebo are not listed in the table. These events included the

following: infection, back pain <javascript:defwindow('pain')>, pain,

hypothermia <javascript:defwindow('hypothermia')>, abdominal

<javascript:defwindow('abdominal')> pain <javascript:defwindow('pain')>,

flu <javascript:defwindow('flu')> syndrome

<javascript:defwindow('syndrome')>, allergic

<javascript:defwindow('allergic')> reaction, fever, asthenia

<javascript:defwindow('asthenia')>, accidental injury

<javascript:defwindow('injury')>, general edema

<javascript:defwindow('edema')>, tachycardia

<javascript:defwindow('tachycardia')>, palpitations, migraine,

ventricular <javascript:defwindow('ventricular')> extrasystole

<javascript:defwindow('extrasystole')>, bradycardia

<javascript:defwindow('bradycardia')>, dyspepsia

<javascript:defwindow('dyspepsia')>, tooth

<javascript:defwindow('tooth')> disorder, constipation, flatulence

<javascript:defwindow('flatulence')>, increased appetite,

gastroenteritis <javascript:defwindow('gastroenteritis')>, GI

<javascript:defwindow('GI')> disorder, ecchymosis, anemia

<javascript:defwindow('anemia')>, leukocytosis

<javascript:defwindow('leukocytosis')>, peripheral

<javascript:defwindow('peripheral')> edema

<javascript:defwindow('edema')>, increased weight, increased SGOT,

myalgia <javascript:defwindow('myalgia')>, arthritis

<javascript:defwindow('arthritis')>, arthralgia

<javascript:defwindow('arthralgia')>, somnolence

<javascript:defwindow('somnolence')>, thinking

<javascript:defwindow('thinking')> abnormality, leg cramps, sleep

<javascript:defwindow('sleep')> disorder, hallucinations, hyperkinesia

<javascript:defwindow('hyperkinesia')>, decreased libido, increased

cough, sinusitis <javascript:defwindow('sinusitis')>, bronchitis

<javascript:defwindow('bronchitis')>, pneumonia

<javascript:defwindow('pneumonia')>, rash

<javascript:defwindow('rash')>, sweating, pruritus, skin disorder,

psoriasis <javascript:defwindow('psoriasis')>, ear

<javascript:defwindow('ear')> pain <javascript:defwindow('pain')>, eye

<javascript:defwindow('eye')> pain <javascript:defwindow('pain')>, ear

<javascript:defwindow('ear')> disorder, taste

<javascript:defwindow('taste')> perversion, dysmenorrhea , urinary

<javascript:defwindow('urinary')> tract <javascript:defwindow('tract')>

infection <javascript:defwindow('infection')>, 4 pyuria, hematuria

<javascript:defwindow('hematuria')>, cystitis, and disturbed menses

<javascript:defwindow('menses')> .

Anyway, put out a post to others who are taking Provigil and get their

opinions, research the drug and talk to your doctor about it.

Sandy in Ca

Carol wrote:

>Hi guys,

>

>Been gone for 8 weeks recovering from my Whipple. Just got released

>by the surgeon to go back to work. Bummer.

>

>I was told to lower my carbs in an attempt to fight the fatigue. I

>was told to stay way low on the fat as I still have CP. So what in

>the heck do I eat????

>

>The one thing I did get away with is I am not diabetic. It was a

>huge concern. While in hell, I mean the hospital, they were giving

>me shots or juice depending on my sugar for the day. Not a way I

>want to live. My heart goes out to you that have to do this.

>

>Diet and fatigue hints are hugely appreciated. I have to start

>thinking again on Nov. 1st. HELP! Sleeping at my desk is not an

>option.

>

>Carol

>

>

>

[Guest guest]

Hi Carol,

I don't remember reading where anyone had their hooks put on during surgery,

but I guess anything is possible. My surgical wire and hooks were put on by

my OD about a week before my surgery, which was way to early for me. It

wasn't that the hooks were bothersome, it's just that they were such the pain

to

clean after eating. Will you have surgical wires put on before your

surgery? Best wishes and good luck!

With regards,

Dale

New Orleans, LA

Upper/Lower

06-02-04

[Guest guest]

Dale,

I guess it was just one less thing I had to deal with pre-surgery.

I'm just over four weeks post-op now ... wired and splinted after

upper and lower surgery.

I'm not sure I know what you mean by " surgical wires " . Are those the

ones that replace the " normal " wires in your braces? If so, those

were taken care of during surgery as well.

Focusing on being unwired ... in a million years!!! (okay, on the

29th, actually)

Take care,

Carol

> Hi Carol,

> I don't remember reading where anyone had their hooks put on

during surgery,

> but I guess anything is possible. My surgical wire and hooks were

put on by

> my OD about a week before my surgery, which was way to early for

me. It

> wasn't that the hooks were bothersome, it's just that they were

such the pain to

> clean after eating. Will you have surgical wires put on before

your

> surgery? Best wishes and good luck!

> With regards,

> Dale

> New Orleans, LA

> Upper/Lower

> 06-02-04

>

>

[Guest guest]

Carol,

In a million years?? OH NO, Don't say that because it would mean a

million years for both of us!!..(haha)

> > Hi Carol,

> > I don't remember reading where anyone had their hooks put on

> during surgery,

> > but I guess anything is possible. My surgical wire and hooks

were

> put on by

> > my OD about a week before my surgery, which was way to early for

> me. It

> > wasn't that the hooks were bothersome, it's just that they were

> such the pain to

> > clean after eating. Will you have surgical wires put on before

> your

> > surgery? Best wishes and good luck!

> > With regards,

> > Dale

> > New Orleans, LA

> > Upper/Lower

> > 06-02-04

> >

> >

[Guest guest]

Actually, I had ortho installed hooks pre-surgery (the kind that

slide along the archwire and go between brackets - one could not

install them during surgery), and since my surgeon wanted a more

accurate placement, he added some twisted wire hooks during surgery.

I lived with the ortho hooks for three weeks pre-op. They are

definitely food grabbers!

> Hi Carol,

> I don't remember reading where anyone had their hooks put on

during surgery,

> but I guess anything is possible. My surgical wire and hooks

were put on by

> my OD about a week before my surgery, which was way to early for

me. It

> wasn't that the hooks were bothersome, it's just that they were

such the pain to

> clean after eating. Will you have surgical wires put on before

your

> surgery? Best wishes and good luck!

> With regards,

> Dale

> New Orleans, LA

> Upper/Lower

> 06-02-04

>

>

>

[Guest guest]

Hi Carol,

Yes, before my hooks were put on, my OD changed my wires out and put in

" surgical " wires and then attached the hooks. The surgical wires were more

study

than the wires they replaced. Maybe someone else can explain to us both as

to why they are called surgical wires. Anyway, the 29th will be here before

you know it and then, if you are like me, will begin to question your OD as

to when will the braces come off! Carol, one thing I learned from my surgery

experience that it definitely was a patience building process. Continued

happy healing to you!

With regards,

Dale

New Orleans, LA

Upper/Lower

06-02-04

[Guest guest]

,

Silly!!! Thanks for the giggle. Sometimes it just feels SOOOOOOO

far away. I'm hanging in there ... and I promise - it's not REALLy a

million year!

Carol

> > > Hi Carol,

> > > I don't remember reading where anyone had their hooks put on

> > during surgery,

> > > but I guess anything is possible. My surgical wire and hooks

> were

> > put on by

> > > my OD about a week before my surgery, which was way to early

for

> > me. It

> > > wasn't that the hooks were bothersome, it's just that they

were

> > such the pain to

> > > clean after eating. Will you have surgical wires put on

before

> > your

> > > surgery? Best wishes and good luck!

> > > With regards,

> > > Dale

> > > New Orleans, LA

> > > Upper/Lower

> > > 06-02-04

> > >

> > >

[Guest guest]

Dale,

Thanks so much for the information. The 29th seems like it's so far

away. I'm trying to focus on today and dig deep inside to find some

patience. That's never been my strong suit! Physically, I'm not

doing too bad. It's more annoying and uncomfortable and embarrassing

than it is painful. For me, it's been the psychological and

emotional elements that are causing the greatest difficulty. These

days, my pain medicine helps more with that than anything else. I'll

be speaking to my Surgeon about it next time I see him. Thankfully,

I feel comfortable enough to open up to him about it - and to this

group. You guys have been so supportive!

Thanks for your well wishes ... and for listening,

Carol

> Hi Carol,

> Yes, before my hooks were put on, my OD changed my wires out and

put in

> " surgical " wires and then attached the hooks. The surgical wires

were more study

> than the wires they replaced. Maybe someone else can explain to

us both as

> to why they are called surgical wires. Anyway, the 29th will be

here before

> you know it and then, if you are like me, will begin to question

your OD as

> to when will the braces come off! Carol, one thing I learned from

my surgery

> experience that it definitely was a patience building process.

Continued

> happy healing to you!

> With regards,

> Dale

> New Orleans, LA

> Upper/Lower

> 06-02-04

>

>