RE: OT Marilyn- when is your surgery?

[Guest guest]

At 07:28 PM 3/26/2008, you wrote:

Anyway, I thought you were

scheduled for 3/25 but I do remember that

maybe the plastic surgeon will be on board?

Care to give an update?

Jodi,

I was originally scheduled for surgery yesterday, 3/25. However, my

oncologist was able to browbeat the insurance into paying for the plastic

surgeon, and things had to be coordinated with him, so the date had to be

changed.

Then my pre-surgery EKG turned up " abnormal " . Right. Had a

perfectly normal one in November, but after a month of getting yanked

around emotionally by the diagnosis of cancer, and not knowing whether we

might have to come up with the price of our house for the plastic

surgeon's fees, they wonder that my heart rate is up and that there are

anomalies?

Anyway, I had to see a cardiologist on Friday. He did a sonagram, which

turned out normal, but refuses to clear me for surgery unless I do a

stress test. He assumed that because I walk with a cane, I would, of

course, not be able to do the treadmill, and wanted to shoot me full of

drugs that would make my heart beat very, very fast.

I'm assured it is a safe procedure. Right. I have a past history of bad

reactions to many drugs. I was very glad Harry was with me, because I

went to pieces.

So, on Friday, I attempt the stress test. I profoundly hope I can pass

the d-mned thing. Because I am SURE he will insist on the drugs if I

cannot do it. And that freaks me out almost more than the surgery. And if

I refuse? I find myself feeling very, very trapped. I do his test, or I'm

denied the surgery? He'll " save " me from heart issues so I can

die from cancer?

In the meantime, I will be seeing my acupuncturist, who emphatically

helps the chronic pain. Next Monday, I see the cardiologist for the

results of the test. On Wednesday, I see a counselor (first available

appointment with a counselor covered by insurance), because the stress of

all this is sending me up a wall. Wednesday afternoon, I see the plastic

surgeon for the first time. Thursday, I see the oncologist for the

pre-surgery appointment. Friday, I see my acupuncturist again. Sunday, I

do the pre-surgery clean-out. Monday, I leave my pups behind and

report to the hospital.

For a procedure I don't want, and fear desperately -- I don't react well

to anesthesia. I just don't wake up. Yet the alternative is to let the

cancer grow.

Tomorrow, I interview a pet sitter. I will also make couple big pots of

chicken soup and put it up in single serving containers for Harry to

bring to the hospital for me after. Friday, it will be oxtail and buffalo

soup.

I checked all the SCD bakeries and determined that no one makes CRACKERS.

Cookies, yes, CRACKERS, no. (To me, crackers do not have honey in them.)

So a friend is making crackers for me. I also need to get

cheddar-parmesan muffins made.

I have pureed vegetables -- carrots, squashes, green beans, butternut in

single serving containers. When I make the soup, I will put up the broth,

put up some meats pureed, and some meats ground.

I guess I'll be as ready as I can be.

But the short answer to your question is, the surgery is currently

scheduled for noon or thereabouts on Monday, 7 April. In the mean time,

if I'm answering things calmly, or sound like things are going smoothly,

just remember: behind the scenes, I'm probably gibbering in terror. (If

you think I don't like hospitals, you're right.)

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Hi Marilyn,

Sorry you have all these additional inconveniences to contend with. On the downside, it's more to worry about . . . on the upside, perhaps dealing with these additional challenges will leave less time for you to worry.

Your family, human and almost human (your beloved dachsunds), friends, and all of us are pulling for you! Hope the counselor can give you some tips on decreasing your anxiety and quieting your mind during this very difficult period, dear.

Sending prayers, white light, well wishes, and lots of hugs your way, lady!

Well wishes to all. ferna, UC/CD, SCD 97, 05, 06, No Meds

Planning your summer road trip? Check out AOL Travel Guides.

[Guest guest]

Hey Marilyn,

You are being slapped around like a ping pong ball!! How are you

supposed to remain calm in all of this? You must be exhausted!

It is so much to deal with illness let alone cancer and sensitivities

to medications like the anesthesia. That is terrifying- I can't

imagine having to choose between the fear of not waking up and cancer.

Bless your heart and I see much strength in you. I really do.

I am thinking of you and will be praying!

Jodi

Do you have any idea how long you will be in the hospital after the

surgery? Like what is the average amount of time?

> But the short answer to your question is, the

> surgery is currently scheduled for noon or

> thereabouts on Monday, 7 April. In the mean time,

> if I'm answering things calmly, or sound like

> things are going smoothly, just remember: behind

> the scenes, I'm probably gibbering in terror. (If

> you think I don't like hospitals, you're right.)

[Guest guest]

Ferna,

I thought I was beginning to get a grasp on things emotionally when the

cardiologist started playing these games. This week was supposed to be a

week to rest and get everything ready. Instead, it's been frightening and

upsetting.

Regrettably, I'm not seeing the counselor until next Wednesday. But the

SCD community comes through again. Raman Prasad called me and recommended

a book called Total Catastrophe Living, and I ordered a copy at

once. It came this week. It's some pretty amazing reading, and it has

helped quite a bit.

My fur children are very anxious. They just don't know what to make of

their normally calm Missy alternating between screaming and pounding her

fists on the walls (which hurts, by the way!) and then crying her eyes

out. Sunny-girl is of the opinion that if I'll just come lie down and let

her wash my face forever, all will be solved. Shadow figures I will

benefit from some of the same, but also thinks that wrapping

himself around my head ought to help.

As for Harry -- well, he's been very supportive. But he's feeling very

helpless, too. This is not something that his engineering knowledge can

fix.

All prayers, white light, and good wishes gratefully accepted.

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Ferna, I thought I was beginning to get a grasp on things emotionally when the cardiologist started playing these games. This week was supposed to be a week to rest and get everything ready. Instead, it's been frightening and upsetting. Regrettably, I'm not seeing the counselor until next Wednesday. But the SCD community comes through again. Raman Prasad called me and recommended a book called Total Catastrophe Living, and I ordered a copy at once. It came this week. It's some pretty amazing reading, and it has helped quite a bit. My fur children are very anxious. They just don't know what to make of their normally calm Missy alternating between screaming and pounding her fists on the walls (which hurts, by the way!) and then crying her eyes out. Sunny-girl is of the opinion that if I'll just come lie down and let her wash my face forever, all will be solved. Shadow figures I will benefit from some of the same, but also thinks that wrapping himself around my head ought to help. As for Harry -- well, he's been very supportive. But he's feeling very helpless, too. This is not something that his engineering knowledge can fix. All prayers, white light, and good wishes gratefully accepted.I was thinking of you Marilyn and wondering now that you'vebeen on SCD for so long and experienced significant healingwhether you'll be as likely to have a quirky response to new drugs as you did during your last hospital visit, when you hadbarely begun SCD. It might be a hopeful point to consider.Thinking of you. All the best,Mara

[Guest guest]

At 06:46 AM 3/27/2008, you wrote:

You are being slapped around

like a ping pong ball!! How are you supposed to remain calm in all of

this? You must be exhausted!

I am. But as I told Ferna, the Total Catastrophe Living book is

helping. I can highly recommend it to anyone here who is coping with the

stresses of their own health issues.

It is so much to deal with

illness let alone cancer and sensitivities to medications like the

anesthesia. That is terrifying- I can't

imagine having to choose between the fear of not waking up and

cancer.

At this point, I am simply praying to get through the surgery. I'm not

even focusing on the pathology report which will tell whether or not the

cancer has spread. I hope it hasn't, with all the delays!

And yes, it is terrifying. To realize that two weeks from today, I will

be lying in a hospital bed... or... not... is more frightening than I can

begin to describe. Because there is so much I want to do.

Bless your heart and I see much

strength in you. I really do.

Thank you -- although I have to say that I don't FEEL that way. I feel

very much the coward.

I am thinking of you and will be

praying!

All good wishes and prayers and positive thoughts are gratefully

accepted. It means so much to have the support of friends, especially SCD

friends who understand what it means to have a debilitating illness which

attacks without warning. I spent 25 years with no control. SCD gave me

back my control. I really think a large part of the rage is having

control ripped away again. And fear that I'll never get it back. After

all, how many of us have NOT raged, " How can my body be doing this

to me? "

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Marilyn,

Are you referring to Full Catastrophe Living, by any chance? If so, I started the program last summer and did the 8 weeks on my own. It has changed my life.

Right now I still remember how to breathe properly a few times a day and like to focus on breath when I walk. It's a huge help. I also sometimes do the body scan a bit while I use my infrared lamps. I used to do a minimum of 45 minutes a day. It might be very significant for you while recuperating, as well as now.

I never did the stretching (yoga) much and I had to stop altogether, because I was injuring myself, but I'm looking forward to growing stronger and starting the program all over again, maybe this summer. I have more energy in the summer.

I hope it truly helps you during this time. I'm sure it will. It's not necessary to read the whole book. The program is really great for pain-reduction and stress-reduction. It really has been life-changing for me. I hope your counselor knows it. I borrowed the book from my counselor, when I got interested in doing the program. She had not pushed it on me, but I had heard about it from one of my clients in a retreat I was running.

still thinking your way, and wishing you many blessings,

Louise

-----Original Message-----From: BTVC-SCD [mailto:BTVC-SCD ]On Behalf Of Wizop Marilyn L. AlmSent: Thursday, March 27, 2008 9:17 AMTo: BTVC-SCD Subject: Re: OT Marilyn- when is your surgery?Ferna,I thought I was beginning to get a grasp on things emotionally when the cardiologist started playing these games. This week was supposed to be a week to rest and get everything ready. Instead, it's been frightening and upsetting.Regrettably, I'm not seeing the counselor until next Wednesday. But the SCD community comes through again. Raman Prasad called me and recommended a book called Total Catastrophe Living, and I ordered a copy at once. It came this week. It's some pretty amazing reading, and it has helped quite a bit.

[Guest guest]

At 01:03 PM 3/27/2008, you wrote:

Are you

referring to Full Catastrophe Living, by any chance? If so, I

started the program last summer and did the 8 weeks on my own. It has

changed my life.

Yes, I am. Nothing like a bookseller getting the title of a book wrong!

That should show you what shape my brain is in. (Or not.)

Regrettably, I don't HAVE eight weeks before the surgery, but I will

continue reading and working.

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

At 11:50 AM 3/27/2008, you wrote:

I was thinking of you Marilyn

and wondering now that you've been on SCD for so long and experienced

significant healing

whether you'll be as likely to have a quirky response to new drugs as you

did during your last hospital visit, when you had

barely begun SCD. It might be a hopeful point to

consider.

Mara,

Funnily enough, my sister (whom I introduced to SCD) said that very thing

last night.

I do weigh 180 pounds less than I did in 2001.

My gut is much, much healthier than it was.

I've been able to exercise three times a week, for 2-3 hours a session,

which I couldn't do 7 years ago. (I'm up from 10 repetitions of each of

16 exercises to 60 repetitions of each exercise.)

Maybe it will go much better than last time.

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

At 08:01 PM 3/27/2008, you wrote:

Those cheddar crackers that you

make - where's the recipe? I have almost all the SCD legal books. If it's

in one of those, just

say so. Or is it your recipe?

My recipe. <g> I love looking at other people's cook books, and I

occasionally make things from Lucy's, especially her cinnamon coffee

cake, with 3-4 times the topping, but mostly, the recipes are my own.

Well, with the exception of Sue's herb-parmesan crackers, and even then,

I have my own spin on them.

>> Also, I wanted to tell you how much I enjoy your comments, SCD

wisdoms and encouragements for others. I have only been a member of this

group for a few weeks but it has helped me immensely. <<

It's nice to know that I can help. SCD seems dreadfully complex at the

beginning, but once you learn the principles, it becomes second nature.

Sure, I still look things up, because there's stuff that I don't

personally use on a regular basis, but someone from a different cultural

background or with different needs might be interested in. Also, when I

say, " Not legal, " or " Legal, maybe, " I like to

provide reasons so that other SCDers can learn the whats and whys. That's

what the people I learned from did, so I try to pass it on... and one

day, you, too, may be passing your knowledge on to people who are as new

as you once were.

>> I'm only 3.5 hours away from New Orleans and going over to N.O.

on Sunday and Monday to visit my friend who is helping her mother still

recover from Katrina. I know you wouldn't want a visit from a perfect

stranger but I want you to know that my thoughts and prayers are with

you during this time! It's very nice for me to know that there are other

SCD people out there so very close. <<

Space... the final frontier... it's in between my ears. I ought to know,

but... where ARE you located? Sunday, in theory, I'm making cheese crisps

and crackers. With all due respect, my house is nothing short of

desperately chaotic (I differentiate between cluttered and dirty, and I

just haven't felt up to cleaning since the diagnosis, and right now, this

place is DIRTY), or I'd invite you over for a cooking lesson. Monday, all

I have going is the !@#$#@! cardiologist's appointment. Do you eat at

home, or out when you're here? (There's a restaurant that I go to which

is REASONABLY safe for SCDers, but they're not perfect by any means.)

Maybe we could meet up -- and even if you're not certain of eating out as

a relative newcomer, we could have some iced tea and chat.

>> Finally, I hope that some day I can say that I'm a " darn

good SCD cook! " <<

Heh. It's amazing what you can do when you've a mind to. I'm about to

find out how good an SCD cooking teacher I am. I don't feel up to

standing around tonight and making the chicken soup, so Harry is doing it

from my recipe. My husband, the design engineer, who burns an excellent

pot of water....

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Hi Marilyn, I am sory for what you are going through. I hope and pray that you will recover soon and fell better again. I really appreciate all your advices on the web site it helps us a lot, thankyou. May God be with you and help you on your recovery. I wish you all the best. Maaza "Wizop Marilyn L. Alm" wrote: Ferna,I thought I was beginning to get a grasp on things emotionally when the

cardiologist started playing these games. This week was supposed to be a week to rest and get everything ready. Instead, it's been frightening and upsetting.Regrettably, I'm not seeing the counselor until next Wednesday. But the SCD community comes through again. Raman Prasad called me and recommended a book called Total Catastrophe Living, and I ordered a copy at once. It came this week. It's some pretty amazing reading, and it has helped quite a bit.My fur children are very anxious. They just don't know what to make of their normally calm Missy alternating between screaming and pounding her fists on the walls (which hurts, by the way!) and then crying her eyes out. Sunny-girl is of the opinion that if I'll just come lie down and let her wash my face forever, all will be solved. Shadow figures I will benefit from some of the same, but also thinks that wrapping himself around my head ought to help.As for Harry -- well, he's been very

supportive. But he's feeling very helpless, too. This is not something that his engineering knowledge can fix.All prayers, white light, and good wishes gratefully accepted. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Lucy's recipes are good aren't they? That was the second book I

bought after Elaine's which my sister overnighted to me after my

Crohn's diagnosis. The parmesan herb bread/cracker recipe is one of

my favorites but I've never made it as crackers. I'll have to try it

that way. I have missed crunching on things so much.

Recently I ordered from Jodi Bager, JkGourmet, after reading about

her website online. I had her first book, Grainfree Gourmet, but

didn't know she made items for sale. I bought all the bixcotti and

three kinds of granola, all SCD legal of course. I've eaten some of

it and it's wonderful. My husband and I are going on a four week

trip to Portugal, France and Ireland and the biscotti and granola

lasts for six and three months respectively. So I'll have some

crunchy things to eat on the trip. Shipping from Canada is usually

$42 but there's a special for $21 right now.

You asked where I live. I live between Gulf Breeze and Navarre

Florida. My visit to New Orleans this weekend is to help my friend

go through boxes that belong to her ninety year old mother who had

four feet of water in her home during Hurricane Katrina. We both

stay with the sister in law and usually just cook there. Also, I

bring a cooler with the necessities like yogurt, farmer's cheese and

other favorites that I depend on.

I can't remember exactly the directions for where I go to the sister

in law's in New Orleans. But I drive right into the heart of the

city, turn right on a bridge (Huey P Long, maybe) and go to General

DeGaulle I think. It's an area that is high and got no water damage

during Katrina. She's a sport for always housing us and all the mom's

boxes are piled up on her back screened in porch.

I knew timing was bad for this trip but it won't be the last trip to

New Orleans. I would love to meet at that SCD friendly restaurant

another time. Which one is it?

Ginger Caro

Crohn's 2.8 years

SCD 2.8 years

> >Those cheddar crackers that you make - where's

> >the recipe? I have almost all the SCD legal

> >books. If it's in one of those, just

> >say so. Or is it your recipe?

>

> My recipe. <g> I love looking at other people's

> cook books, and I occasionally make things from

> Lucy's, especially her cinnamon coffee cake, with

> 3-4 times the topping, but mostly, the recipes

> are my own. Well, with the exception of Sue's

> herb-parmesan crackers, and even then, I have my own spin on them.

>

> >> Also, I wanted to tell you how much I enjoy

> your comments, SCD wisdoms and encouragements for

> others. I have only been a member of this group

> for a few weeks but it has helped me immensely. <<

>

> It's nice to know that I can help. SCD seems

> dreadfully complex at the beginning, but once you

> learn the principles, it becomes second nature.

> Sure, I still look things up, because there's

> stuff that I don't personally use on a regular

> basis, but someone from a different cultural

> background or with different needs might be

> interested in. Also, when I say, " Not legal, " or

> " Legal, maybe, " I like to provide reasons so that

> other SCDers can learn the whats and whys. That's

> what the people I learned from did, so I try to

> pass it on... and one day, you, too, may be

> passing your knowledge on to people who are as new as you once were.

>

> >> I'm only 3.5 hours away from New Orleans and

> going over to N.O. on Sunday and Monday to visit

> my friend who is helping her mother still recover

> from Katrina. I know you wouldn't want a visit

> from a perfect stranger but I want you to know

> that my thoughts and prayers are with you during

> this time! It's very nice for me to know that

> there are other SCD people out there so very close. <<

>

> Space... the final frontier... it's in between my

> ears. I ought to know, but... where ARE you

> located? Sunday, in theory, I'm making cheese

> crisps and crackers. With all due respect, my

> house is nothing short of desperately chaotic (I

> differentiate between cluttered and dirty, and I

> just haven't felt up to cleaning since the

> diagnosis, and right now, this place is DIRTY),

> or I'd invite you over for a cooking lesson.

> Monday, all I have going is the !@#$#@!

> cardiologist's appointment. Do you eat at home,

> or out when you're here? (There's a restaurant

> that I go to which is REASONABLY safe for SCDers,

> but they're not perfect by any means.) Maybe we

> could meet up -- and even if you're not certain

> of eating out as a relative newcomer, we could have some iced tea

and chat.

>

> >> Finally, I hope that some day I can say that

> I'm a " darn good SCD cook! " <<

>

> Heh. It's amazing what you can do when you've a

> mind to. I'm about to find out how good an SCD

> cooking teacher I am. I don't feel up to standing

> around tonight and making the chicken soup, so

> Harry is doing it from my recipe. My husband, the

> design engineer, who burns an excellent pot of water....

>

>

> — Marilyn

> New Orleans, Louisiana, USA

> Undiagnosed IBS since 1976, SCD since 2001

> Darn Good SCD Cook

> No Human Children

> Shadow & Sunny Longhair Dachshund

>

[Guest guest]

At 05:55 AM 3/28/2008, you wrote:

I can't remember exactly the

directions for where I go to the sister in law's in New Orleans. But I

drive right into the heart of the

city, turn right on a bridge (Huey P Long, maybe) and go to General

DeGaulle I think. It's an area that is high and got no water damage

during Katrina.

And it just happens, if you are off Gen. DeGaulle, to be only a few miles

from the area that I am in. The SCD friendly restaurant, alas, is out in

Metairie, but it's not hard to get to. Like I said, they're not perfect,

but they sincerely try to make the meal fully legal. (I wouldn't, for

instance, want to eat there every day of the week.)

>> She's a sport for always housing us and all the mom's boxes are

piled up on her back screened in porch. I knew timing was bad for this

trip but it won't be the last trip to New Orleans. I would love to meet

at that SCD friendly restaurant another time. Which one is it?

<<

Lots of people in our area have pitched in like that. The church I attend

installed showers in the education wing of the church building, and for

literally years now, church groups coming to help could stay there, with

cots to sleep on, and meals provided by the women of the church.

I eat at the New Orleans Hamburger and Seafood Restaurant. I usually get

a plain grilled tilapia and they'll substitute mixed steamed vegetables

for their illegal Mardi Gras Slaw. I take my own butter and seasoning.

And salad dressing -- which is " Hurricane Dressing, " of course.

Although invented before Katrina.

<g> A friend and I are threatening to start making my various

crackers for sale once I'm over this current health crisis. It does look

like there'd be a market!

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Hey Marilyn-

Are you kidding me??! I would totally be part of that market!

I would love to buy yummy scd ready crackers!

Jodi

> <g> A friend and I are threatening to start

> making my various crackers for sale once I'm over

> this current health crisis. It does look like there'd be a market!

[Guest guest]

wow, I haven't made any crackers yet, and I've started

craving something crunchy. :-)

Louise

> <g> A friend and I are threatening to start

> making my various crackers for sale once I'm over

> this current health crisis. It does look like there'd be a market!