Re: I need HELP/ Marilyn

[Guest guest]

Hi Marilyn,It was mine about "meat fish and zucks" and yes, I know it's not good and I'm feeling helpless. I've tried green beans but sometimes they constipated me, sometimes I had a lot of gas. I've tried spinach - same story, red peppers, broccoli. All of this was cooked very well, pealed seeded, and pureed. I tried egg yolk - soft boiled, hard boiled, but they make my stools loose. I don't have success with yogurt (goat and cow's) and probiotics too. Except zucchini I eat avocado and butternut squash and pumpkin. Sometimes banana ( 1/4). I'm bored to death of these foods, but that it's not the problem. I'm afraid that may be I "lost" somehow the ability to digest other foods.On top of it I'm on Prednisone almost a year and having very hard time to wean off. I have all the schedules

from the lust but till now anything worked.I have normal stools, formed 1x,2x daily but any change in my diet change the status quo. I try any new food very cautiously in small amounts (1 tsp). Sorry for the long post, I don't want to sound desperate because I don't allow to myself to feel that way, but I don't know how to proceed.SincerelyYanaUC, SCD since March 2008To: BTVC-SCD Sent: Wednesday, April 1, 2009

1:08:32 AMSubject: Re: Re: I need HELP! At 10:24 AM 3/31/2009, you wrote: I've been on SCD for a year and still eating mostly meat fish and zucchini. Meat and fish are good. Just zucchini after a year is not so good. What other vegetables have you tried and how did you prepare them? — 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]

Have you ever tried accupuncture? Sometimes I think that diet alone can't heal you and other natural methods can help a lot. It certainly helped me. You can even do accupressure if youre afraid of needles =) I read in an inflammation book that egg yolks are very inflammatory, so that may be why they make your stools loose. Can you do nut flour? That might give you some variety. Good luck!AlyssaHi Marilyn,It was mine about "meat fish and zucks" and yes, I know it's not good and I'm feeling helpless. I've tried green beans but sometimes they constipated me, sometimes I had a lot of gas. I've tried spinach - same story, red peppers, broccoli. All of this was cooked very well, pealed seeded, and pureed. I tried egg yolk - soft boiled, hard boiled, but they make my stools loose. I don't have success with yogurt (goat and cow's) and probiotics too. Except zucchini I eat avocado and butternut squash and pumpkin. Sometimes banana ( 1/4). I'm bored to death of these foods, but that it's not the problem. I'm afraid that may be I "lost" somehow the ability to digest other foods.On top of it I'm on Prednisone almost a year and having very hard time to wean off. I have all the schedules from the lust but till now anything worked.I have normal stools, formed 1x,2x daily but any change in my diet change the status quo. I try any new food very cautiously in small amounts (1 tsp). Sorry for the long post, I don't want to sound desperate because I don't allow to myself to feel that way, but I don't know how to proceed.SincerelyYanaUC, SCD since March 2008From: Wizop Marilyn L. Alm <LouisianaSCDLagniappegmail>To: BTVC-SCD Sent: Wednesday, April 1, 2009 1:08:32 AMSubject: Re: Re: I need HELP!At 10:24 AM 3/31/2009, you wrote:I've been on SCD for a year and still eating mostly meat fish and zucchini.Meat and fish are good. Just zucchini after a year is not so good.What other vegetables have you tried and how did you prepare them?— 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 Yana,

This sounds exactly like me!

While on the diet I had to go on Prednisone after getting very ill eating

contaminated meat from Whole Foods which led to a meat recall.

Anyway, Prednisone helped me from going in that danger zone but I totally

stagnated with food. Could only eat meat (chicken and beef) zucchinis and

squash eventually some brocolli and homemade juice that was heavily diluted.

Prednsione " stopped " me from progressing. I could not take any probitics or

yogurt.

Eventually this situation led me into looking into LDN or Lowdosenaltrexone.org

which helped me successfully wean off of Prednisone with also supplementing DHEA

(to help adrenals. My DHEA levels are like non-existent)

It is very frustrating feeling stuck!

Jodi

[Guest guest]

Hi Alyssa,Thank you for the suggestions, It was my intention to check acupuncture for a long time. Obviously I'm slow with tying something new. Or maybe I'm too cautious and think too much. I don't know about nut flour, it's seems very advance for me. But may be I'll be brave one of these days and try.Good luck to you tooYanaUC, SCD since March 2008To: BTVC-SCD Sent: Wednesday, April 1, 2009 12:58:26 PMSubject: Re: Re: I need HELP/ Marilyn Have you ever tried accupuncture? Sometimes I think that diet alone can't heal you and other natural methods can help a lot. It certainly helped me. You can even do accupressure if youre afraid of needles =) I read in an inflammation book that egg yolks are very inflammatory, so that may be why they make your stools loose. Can you do nut flour? That might give you some variety. Good

luck!AlyssaHi Marilyn,It was mine about "meat fish and zucks" and yes, I know it's not good and I'm feeling helpless. I've tried green beans but sometimes they constipated me, sometimes I had a lot of gas. I've tried spinach - same story, red peppers, broccoli. All of this was

cooked very well, pealed seeded, and pureed. I tried egg yolk - soft boiled, hard boiled, but they make my stools loose. I don't have success with yogurt (goat and cow's) and probiotics too. Except zucchini I eat avocado and butternut squash and pumpkin. Sometimes banana ( 1/4). I'm bored to death of these foods, but that it's not the problem. I'm afraid that may be I "lost" somehow the ability to digest other foods.On top of it I'm on Prednisone almost a year and having very hard time to wean off. I have all the schedules from the lust but till now anything worked.I have normal stools, formed 1x,2x daily but any change in my diet change the status quo. I try any new food very cautiously in small amounts (1 tsp). Sorry for the long post, I don't want to sound desperate because I don't allow to myself to feel that way, but I don't know how to proceed.SincerelyYanaUC, SCD since

March 2008From: Wizop Marilyn L. Alm <LouisianaSCDLagniap pegmail (DOT) com>To: BTVC-SCD@yahoogroup s.comSent: Wednesday, April 1, 2009 1:08:32 AMSubject: Re: Re: I need HELP!At 10:24 AM 3/31/2009, you wrote:I've been on SCD for a year and still eating mostly meat fish and zucchini.Meat and fish are good. Just zucchini after a year is not so good.What other vegetables have you tried and how did you prepare them?— 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 Alyssa,Thank you for the suggestions, It was my intention to check acupuncture for a long time. Obviously I'm slow with tying something new. Or maybe I'm too cautious and think too much. I don't know about nut flour, it's seems very advance for me. But may be I'll be brave one of these days and try.Good luck to you tooYanaUC, SCD since March 2008To: BTVC-SCD Sent: Wednesday, April 1, 2009 12:58:26 PMSubject: Re: Re: I need HELP/ Marilyn Have you ever tried accupuncture? Sometimes I think that diet alone can't heal you and other natural methods can help a lot. It certainly helped me. You can even do accupressure if youre afraid of needles =) I read in an inflammation book that egg yolks are very inflammatory, so that may be why they make your stools loose. Can you do nut flour? That might give you some variety. Good

luck!AlyssaHi Marilyn,It was mine about "meat fish and zucks" and yes, I know it's not good and I'm feeling helpless. I've tried green beans but sometimes they constipated me, sometimes I had a lot of gas. I've tried spinach - same story, red peppers, broccoli. All of this was

cooked very well, pealed seeded, and pureed. I tried egg yolk - soft boiled, hard boiled, but they make my stools loose. I don't have success with yogurt (goat and cow's) and probiotics too. Except zucchini I eat avocado and butternut squash and pumpkin. Sometimes banana ( 1/4). I'm bored to death of these foods, but that it's not the problem. I'm afraid that may be I "lost" somehow the ability to digest other foods.On top of it I'm on Prednisone almost a year and having very hard time to wean off. I have all the schedules from the lust but till now anything worked.I have normal stools, formed 1x,2x daily but any change in my diet change the status quo. I try any new food very cautiously in small amounts (1 tsp). Sorry for the long post, I don't want to sound desperate because I don't allow to myself to feel that way, but I don't know how to proceed.SincerelyYanaUC, SCD since

March 2008From: Wizop Marilyn L. Alm <LouisianaSCDLagniap pegmail (DOT) com>To: BTVC-SCD@yahoogroup s.comSent: Wednesday, April 1, 2009 1:08:32 AMSubject: Re: Re: I need HELP!At 10:24 AM 3/31/2009, you wrote:I've been on SCD for a year and still eating mostly meat fish and zucchini.Meat and fish are good. Just zucchini after a year is not so good.What other vegetables have you tried and how did you prepare them?— 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]

I think the fact that the nut flour is ground up would help a lot, considering it's sort of pre-chewed. That way, all you digestive enzymes can get to all parts of the nut and digest it fully. Speaking of which, have you tried taking digestive enzymes with your meal? I'm not sure if you could find SCD legal ones and I'm not sure how they stand in the SCD diet, but I've noticed that when I take them I have a lot less gas, which I take as a good sign that my food was digested =) They may make you feel better about trying a new food, because then your body doesn't have to do ALL the work.AlyssaHi Alyssa,Thank you for the suggestions, It was my intention to check acupuncture for a long time. Obviously I'm slow with tying something new. Or maybe I'm too cautious and think too much. I don't know about nut flour, it's seems very advance for me. But may be I'll be brave one of these days and try.Good luck to you tooYanaUC, SCD since March 2008From: Alyssa Luck <luckycharmsnc (DOT) rr.com>To: BTVC-SCD Sent: Wednesday, April 1, 2009 12:58:26 PMSubject: Re: Re: I need HELP/ MarilynHave you ever tried accupuncture? Sometimes I think that diet alone can't heal you and other natural methods can help a lot. It certainly helped me. You can even do accupressure if youre afraid of needles =) I read in an inflammation book that egg yolks are very inflammatory, so that may be why they make your stools loose. Can you do nut flour? That might give you some variety. Good luck!AlyssaHi Marilyn,It was mine about "meat fish and zucks" and yes, I know it's not good and I'm feeling helpless. I've tried green beans but sometimes they constipated me, sometimes I had a lot of gas. I've tried spinach - same story, red peppers, broccoli. All of this was cooked very well, pealed seeded, and pureed. I tried egg yolk - soft boiled, hard boiled, but they make my stools loose. I don't have success with yogurt (goat and cow's) and probiotics too. Except zucchini I eat avocado and butternut squash and pumpkin. Sometimes banana ( 1/4). I'm bored to death of these foods, but that it's not the problem. I'm afraid that may be I "lost" somehow the ability to digest other foods.On top of it I'm on Prednisone almost a year and having very hard time to wean off. I have all the schedules from the lust but till now anything worked.I have normal stools, formed 1x,2x daily but any change in my diet change the status quo. I try any new food very cautiously in small amounts (1 tsp). Sorry for the long post, I don't want to sound desperate because I don't allow to myself to feel that way, but I don't know how to proceed.SincerelyYanaUC, SCD since March 2008From: Wizop Marilyn L. Alm <LouisianaSCDLagniap pegmail (DOT) com>To: BTVC-SCD@yahoogroup s.comSent: Wednesday, April 1, 2009 1:08:32 AMSubject: Re: Re: I need HELP!At 10:24 AM 3/31/2009, you wrote:I've been on SCD for a year and still eating mostly meat fish and zucchini.Meat and fish are good. Just zucchini after a year is not so good.What other vegetables have you tried and how did you prepare them?— 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 Alyssa,A lot of people on the list take enzymes and there are SCD legal ones. It is a good suggestion and might be an option for me..ThanksYanaUC, SCD since March 2008To: BTVC-SCD Sent: Wednesday, April 1, 2009 8:08:27 PMSubject: Re:

Re: I need HELP/ Marilyn I think the fact that the nut flour is ground up would help a lot, considering it's sort of pre-chewed. That way, all you digestive enzymes can get to all parts of the nut and digest it fully. Speaking of which, have you tried taking digestive enzymes with your meal? I'm not sure if you could find SCD legal ones and I'm not sure how they stand in the SCD diet, but I've noticed that when I take them I have a lot less gas, which I take as a good sign that my food was digested =) They may make you feel better about trying a new food, because then your body doesn't have to do ALL the work.AlyssaOn Apr 1,

2009, at 11:17 AM, Yana Jeleva wrote:Hi Alyssa,Thank you for the suggestions, It was my intention to check acupuncture for a long time. Obviously I'm slow with tying something new. Or maybe I'm too cautious and think too much. I don't know about nut flour, it's seems very advance for me. But may be I'll be brave one of these days and try.Good luck to you

tooYanaUC, SCD since March 2008From: Alyssa Luck <luckycharms@ nc.rr.com>To: BTVC-SCD@yahoogroup s.comSent: Wednesday, April 1, 2009 12:58:26 PMSubject: Re: Re: I need HELP/ MarilynHave you ever tried accupuncture? Sometimes I

think that diet alone can't heal you and other natural methods can help a lot. It certainly helped me. You can even do accupressure if youre afraid of needles =) I read in an inflammation book that egg yolks are very inflammatory, so that may be why they make your stools loose. Can you do nut flour? That might give you some variety. Good luck!AlyssaHi Marilyn,It was mine about "meat fish and zucks" and yes, I know it's not good and I'm feeling helpless. I've tried green beans but sometimes they constipated me, sometimes I had a lot of gas. I've tried spinach - same story, red peppers, broccoli. All of this was cooked very well, pealed seeded, and pureed. I tried egg yolk - soft boiled, hard boiled, but they make my stools loose. I don't have success with yogurt (goat and cow's) and probiotics too. Except zucchini I eat avocado and butternut squash and pumpkin. Sometimes banana ( 1/4). I'm bored to death of these foods, but that it's not the problem. I'm afraid that may be I "lost" somehow the ability to digest other foods.On top of it I'm on Prednisone almost a year and having very hard time to wean off. I have all the schedules from the lust but till now anything worked.I have normal

stools, formed 1x,2x daily but any change in my diet change the status quo.. I try any new food very cautiously in small amounts (1 tsp). Sorry for the long post, I don't want to sound desperate because I don't allow to myself to feel that way, but I don't know how to proceed.SincerelyYanaUC, SCD since March 2008From: Wizop Marilyn L. Alm <LouisianaSCDLagniap pegmail (DOT) com>To: BTVC-SCD@yahoogroup s.comSent: Wednesday, April 1, 2009 1:08:32 AMSubject: Re: Re: I need HELP!At 10:24 AM 3/31/2009, you wrote:I've been on SCD for a year and still eating mostly meat fish and zucchini.Meat and fish are good. Just zucchini after a year is not so good.What other vegetables have you tried and how did you prepare them?— 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 03:32 AM 4/1/2009, you wrote:

It was mine about " meat

fish and zucks " and yes, I know it's not good and I'm feeling

helpless. I've tried green beans but sometimes they constipated me,

sometimes I had a lot of gas. I've tried spinach - same story, red

peppers, broccoli. All of this was cooked very well, pealed seeded, and

pureed. I tried egg yolk - soft boiled, hard boiled, but they make my

stools loose. I don't have success with yogurt (goat and cow's) and

probiotics too. Except zucchini I eat avocado and butternut squash and

pumpkin. Sometimes banana ( 1/4). I'm bored to death of these foods, but

that it's not the problem. I'm afraid that may be I " lost "

somehow the ability to digest other foods.

Yana,

Keep in mind that we probably have already lost the ability to digest

many of these foods -- otherwise we wouldn't be sick in the first

place.

Something I remember doing was eating small amounts of a new food, and

then going back to my zucchinis for at least a day or two. And then

another small amount, and back to the zucchinis.

I found that even when I didn't have overt symptoms (diarrhea, urgency)

within a few hours of eating a food, I might have " soft

constipation " if I ate foods I wasn't real good with. By " soft

constipation, " I mean soft stools which just won't come out, and

which stick to the rectal area, making it very difficult to get clean.

(Sorry if this is too graphic.)

I remember reading, over on Pecan Bread, I think, about children who did

not progress with adding vegetables until those vegetables were pureed.

At the time, I didn't give it much thought because I was well past that

stage.

But, thanks to all the so-called inactive ingredients in the pain meds

last year, I was having a number of issues that I hadn't had, literally

in years.

So, I started doing thick veggie soups: one or two peeled, cooked

zucchini, a few spoonfuls of cooked whatever (spinach, green beans, etc.

and maybe a pinch or two a some tolerated seasoning. Sometimes I added

tomato juice, which I tolerated. Sometimes I added bone broths. Sometimes

I added a dollop pf yogurt. Then I blended the every-loving heck out of

it, poured it into a pan, heated it up, and ate it. (If using yogurt, I

often stirred the yogurt in after everything else was in my

bowl.)

By pureeing the vegetables, I pre-digested them, making them like baby

food -- and it turned out that this was the key for re-balancing my

system. My system had to do less work to handle the veggies, so could

extract the nutrients, which improved the healing factor -- and once I

got rid of the pain medications and their so-called inactive

bacteria-food ingredients, I was able to get things back on an even

keel.

Don't know if this will work for you, but it's a possibility.

—

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 Yana..

I think it is important that you post as many messages as you need to especially

through this very rough time for you.. It's not easy stagnating- it's an awful

feeling. G-d forbid you add Prednisone Hunger on top of that for me its a

recipe for depression.

This group is great and the people on it are fantastic. I do not think I could

do all I do without all of you!

As for the LDN- it's hard finding GI's that work with it (I have yet to learn of

one) but some general practitioners and integrative docs will prescribe it.

On reading the LDN yahoo group people overseas often times get LDN shipped to

them and they prepare the LDN on their own. People can help you out with this

if you want. Whether you'll get guidance with a doctor in your hometown- I

don't know. I am not advising anyone to stop seeing their doctor and make a

home brew laboratory for LDN LOL. It's just an option some people use. You can

also have phone consultations with Dr McCandles or even Dr Skip. Some people

have spoken to the docs heading the trial over at Uni of Penn for kids to ask

more esoteric questions.

So there are some " far out " options for you..

Also, have you tried bone broth and adding ghee (clarified butter) to your food?

What about steaming and then pureeing like baby food? This also really helped

me during the difficult Prednisone phase.

Thanks for acknowledging my rough ride. It has been incredibly full of sickness

but SCD has given me a lot of hope that I can get better. Everything up to SCD

robbed me of my hope which was awful. I bless this diet daily.

Jodi

[Guest guest]

Keep in mind that we probably have already lost the ability to digest many of these foods -- otherwise we wouldn't be sick in the first place.Thanks Marilyn, for the reminder.We always lose perspective when things go bad and need someone wiser and more experienced to clear the sky.I'll keep on trying and that is my approach to the new food too. I read all your advises and dream to make some of your wonderful recipes. But now I'm just a "baby" not fit for your gourmet food :)Actually, in the beginning of the diet, when I was absolutely in

the dark about following the "stages", I made your cherry -pecan pie. It was the most amazing sweet treat I've ever been eaten!!!How far am I from that now..... But may be one day it will be my prize for being stubborn and patient.Thanks againYanaUC, SCD since March 2008

[Guest guest]

Hi Jodi,Yes it's rough path we're all going and help here in the group is invaluable.These are interesting suggestions about LDN and I'll give more time to think about that. I'm very bad "chemist" and LDN lab will not be successful in my home LOL.Somehow bone broth has strange impact on my colon , with more dry foods I'm feeling better. Another thing that makes me think I'm crazy and why the normal things don't work for me like for the other people. But then when I read somebody's strange story and I know I'm in the right place.Be healthy Jodi, and good luck with prepYanaTo: BTVC-SCD Sent: Wednesday, April 1, 2009 11:14:10 PMSubject: Re: I need HELP/ Marilyn Hi Yana.. I think it is important that you post as many messages as you need to especially through this very rough time for you.. It's not easy stagnating- it's an awful feeling. G-d forbid you add Prednisone Hunger on top of that for

me its a recipe for depression. This group is great and the people on it are fantastic. I do not think I could do all I do without all of you! As for the LDN- it's hard finding GI's that work with it (I have yet to learn of one) but some general practitioners and integrative docs will prescribe it. On reading the LDN yahoo group people overseas often times get LDN shipped to them and they prepare the LDN on their own. People can help you out with this if you want. Whether you'll get guidance with a doctor in your hometown- I don't know. I am not advising anyone to stop seeing their doctor and make a home brew laboratory for LDN LOL. It's just an option some people use. You can also have phone consultations with Dr McCandles or even Dr Skip. Some people have spoken to the docs heading the trial over at Uni of Penn for kids to ask more esoteric questions. So there are some "far out" options for you.. Also,

have you tried bone broth and adding ghee (clarified butter) to your food? What about steaming and then pureeing like baby food? This also really helped me during the difficult Prednisone phase. Thanks for acknowledging my rough ride. It has been incredibly full of sickness but SCD has given me a lot of hope that I can get better. Everything up to SCD robbed me of my hope which was awful. I bless this diet daily. Jodi

[Guest guest]

At 03:21 PM 4/1/2009, you wrote:

Thanks Marilyn, for the

reminder.

We always lose perspective when things go bad and need someone wiser and

more experienced to clear the sky.

I'll keep on trying and that is my approach to the new food too. I read

all your advises and dream to make some of your wonderful recipes. But

now I'm just a " baby " not fit for your gourmet food

Actually, in the beginning of the diet, when I was absolutely in the dark

about following the " stages " , I made your cherry -pecan pie. It

was the most amazing sweet treat I've ever been eaten!!!

How far am I from that now..... But may be one day it will be my prize

for being stubborn and patient.

Yana,

My usual shriek of frustration over slow healing is " G-d grant me

patience... and grant it now! "

I'm glad you liked the cherry-pecan cake, even if it didn't entirely like

you at the beginning!

My prize when, not if, when, I am declared cancer free can be found

here:

www.rockymountaineer.com

<wicked grin> Now, picture tackling those gourmet chefs and

telling them, " THIS is how you'll cook my food! "

—

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,

> My prize when, not if, when, I am declared cancer free can be found here:

You were not %100 declared cancer free??

> www.rockymountaineer.com

>

> <wicked grin> Now, picture tackling those gourmet

> chefs and telling them, " THIS is how you'll cook my food! "

Wow.. This looks amazing.. Maybe you can barter and teach THEM how to cook!

Jodi

[Guest guest]

Hi Marilyn,

> My prize when, not if, when, I am declared cancer free can be found here:

You were not %100 declared cancer free??

> www.rockymountaineer.com

>

> <wicked grin> Now, picture tackling those gourmet

> chefs and telling them, " THIS is how you'll cook my food! "

Wow.. This looks amazing.. Maybe you can barter and teach THEM how to cook!

Jodi

[Guest guest]

Hi Marilyn,

> My prize when, not if, when, I am declared cancer free can be found here:

You were not %100 declared cancer free??

> www.rockymountaineer.com

>

> <wicked grin> Now, picture tackling those gourmet

> chefs and telling them, " THIS is how you'll cook my food! "

Wow.. This looks amazing.. Maybe you can barter and teach THEM how to cook!

Jodi

[Guest guest]

Jodi,

My labs immediately after the surgery were negative. Two sets of post

surgery labs have been negative. This is all good. But I must have my

labs come back negative for five full years before I am declared cancer

free.

My next set of labs will be done on 21 May, and I will have the results

about a week later.

It's something which kind of keeps me on tenter-hooks, because a lady who

was very supportive to me last year, who had been cancer-free for a year

and a half, found out just a couple months ago that the cancer had

recurred. Granted, hers was a different kind of cancer, but it's still

nervous-making.

>

www.rockymountaineer.com

Wow.. This looks amazing..

Maybe you can barter and teach THEM how to cook!

It will be the trip of a lifetime....

—

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]

Jodi,

My labs immediately after the surgery were negative. Two sets of post

surgery labs have been negative. This is all good. But I must have my

labs come back negative for five full years before I am declared cancer

free.

My next set of labs will be done on 21 May, and I will have the results

about a week later.

It's something which kind of keeps me on tenter-hooks, because a lady who

was very supportive to me last year, who had been cancer-free for a year

and a half, found out just a couple months ago that the cancer had

recurred. Granted, hers was a different kind of cancer, but it's still

nervous-making.

>

www.rockymountaineer.com

Wow.. This looks amazing..

Maybe you can barter and teach THEM how to cook!

It will be the trip of a lifetime....

—

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]

Woooo hooooo Marilyn,That's a prize for a big success!I really, really hope that after a five years everything would be perfect for you and I still be here in that wonderful group to congratulate you AND of course to read about your amazing journey with that train!!!!YanaTo: BTVC-SCD Sent: Thursday, April 2, 2009 1:04:41 AMSubject: Re: Re: I need HELP/ Marilyn At 03:21 PM 4/1/2009, you wrote: Thanks Marilyn, for the reminder. We always lose perspective when things go bad and need someone wiser and more experienced to clear the sky. I'll keep on trying and that is my approach to the new food too. I read all your advises and dream to make some of your wonderful recipes. But now I'm just a "baby" not fit for your gourmet food Actually, in the beginning of the diet, when I was absolutely in the dark

about following the "stages", I made your cherry -pecan pie. It was the most amazing sweet treat I've ever been eaten!!! How far am I from that now..... But may be one day it will be my prize for being stubborn and patient. Yana, My usual shriek of frustration over slow healing is "G-d grant me patience... and grant it now!" I'm glad you liked the cherry-pecan cake, even if it didn't entirely like you at the beginning! My prize when, not if, when, I am declared cancer free can be found here: www.rockymountainee r.com <wicked grin> Now, picture tackling those gourmet chefs and telling them, "THIS is how you'll cook my food!" — 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,

Hmmm--that train trip looks wonderful.......you're going to wait.........why?

What a chance of a lifetime. You're feeling the best you have in years. Why wait? A proclamation in 5 years shouldn't dictate what you want to do today. ( But I know you know that)

All the best,

Terry

[Guest guest]

Marilyn,

I am so ignorant about Cancer testing. I didn't know that for some Cancers-

patients need to be rechecked over a period of time to be labeled Cancer free.

What a nuisance to have hanging over your head.

One of the main feelings I have been having is that even if I am told my

situation is pre-cancer or low grade dysplasia maybe I just want it removed. I

didn't even think about the subsequent testing that would need to be done. I

just wouldn't want this looming. The doc did say my bizzare back pain can be

from this " mass " if that is what it is.

Maybe it is also why some blood work has not straightened out. Anyway, must not

get too ahead of myself.

The lab work you do is strictly blood work?

What kind of Cancer does your friend have?

Jodi

> My labs immediately after the surgery were

> negative. Two sets of post surgery labs have been

> negative. This is all good. But I must have my

> labs come back negative for five full years before I am declared cancer free.

>

> My next set of labs will be done on 21 May, and I

> will have the results about a week later.

>

> It's something which kind of keeps me on

> tenter-hooks, because a lady who was very

> supportive to me last year, who had been

> cancer-free for a year and a half, found out just

> a couple months ago that the cancer had recurred.

> Granted, hers was a different kind of cancer, but it's still nervous-making.

[Guest guest]

People also use LDN successfully to fight cancer.

Just a head's up.

Mara

> Marilyn,

>

> I am so ignorant about Cancer testing. I didn't know that for some

> Cancers- patients need to be rechecked over a period of time to be

> labeled Cancer free. What a nuisance to have hanging over your head.

> One of the main feelings I have been having is that even if I am

> told my situation is pre-cancer or low grade dysplasia maybe I just

> want it removed. I didn't even think about the subsequent testing

> that would need to be done. I just wouldn't want this looming. The

> doc did say my bizzare back pain can be from this " mass " if that is

> what it is.

> Maybe it is also why some blood work has not straightened out.

> Anyway, must not get too ahead of myself.

>

> The lab work you do is strictly blood work?

>

> What kind of Cancer does your friend have?

>

> Jodi

>

>

>

>> My labs immediately after the surgery were

>> negative. Two sets of post surgery labs have been

>> negative. This is all good. But I must have my

>> labs come back negative for five full years before I am declared

>> cancer free.

>>

>> My next set of labs will be done on 21 May, and I

>> will have the results about a week later.

>>

>> It's something which kind of keeps me on

>> tenter-hooks, because a lady who was very

>> supportive to me last year, who had been

>> cancer-free for a year and a half, found out just

>> a couple months ago that the cancer had recurred.

>> Granted, hers was a different kind of cancer, but it's still

>> nervous-making.

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Marilyn,

OK--I figured finances might be an issue--I can relate. There are a lot of things I would like to do but can't afford them. So, this trip is not dependent on being declared cancer free in five years, it's just part of the five year plan and being declared cancer free will be the icing on the cake!

You write beautifully so I'm not surprised you are a writer.

It's wonderful to have outside hobbies like your conference--I think it helps keep you healthy. I collect antique Czech perfume bottles and love the research part of it which includes a passion for WWII ( they are tied together, believe it or not.) But I have not been able to afford to buy any of those beauties this year.

I am also holding my cancer breath... I have had abnormal mammogram results with 2 bilateral biopsies and a diagnosis of ADH--atypical ductal hyperplasia. Not cancer, but with my dear departed Mom a breast cancer survivor, I am at high risk and I am currently taking Tamoxifen, an anti-estrogen, for the next five years to help prevent breast cancer. I was gene tested and fortunately do not have the mutated BRACA genes that place women ( and men) at extremely high risk of breast and ovarian cancer.

I have always loved historical fiction--is that your interest or straight historical non-fiction? ( like that, too)

Sorry to go OT.

Terry

[Guest guest]

Marilyn,

OK--I figured finances might be an issue--I can relate. There are a lot of things I would like to do but can't afford them. So, this trip is not dependent on being declared cancer free in five years, it's just part of the five year plan and being declared cancer free will be the icing on the cake!

You write beautifully so I'm not surprised you are a writer.

It's wonderful to have outside hobbies like your conference--I think it helps keep you healthy. I collect antique Czech perfume bottles and love the research part of it which includes a passion for WWII ( they are tied together, believe it or not.) But I have not been able to afford to buy any of those beauties this year.

I am also holding my cancer breath... I have had abnormal mammogram results with 2 bilateral biopsies and a diagnosis of ADH--atypical ductal hyperplasia. Not cancer, but with my dear departed Mom a breast cancer survivor, I am at high risk and I am currently taking Tamoxifen, an anti-estrogen, for the next five years to help prevent breast cancer. I was gene tested and fortunately do not have the mutated BRACA genes that place women ( and men) at extremely high risk of breast and ovarian cancer.

I have always loved historical fiction--is that your interest or straight historical non-fiction? ( like that, too)

Sorry to go OT.

Terry

[Guest guest]

Terry,

You know so many people that I know (both in real life and online) are going

through this bizzare Cancer scare.

It is making me question the stars and if I should start looking into some kind

of Astrology to figure out what the heck is going on. Someone just mentioned

Edgar Cayce to me.

I am sending you major happy vibes that all returns well!

Such a nuisance to have dangling over our head.

Big hugs and stay strong!

Jodi

> I am also holding my cancer breath... I have had abnormal mammogram results

with 2 bilateral biopsies and a diagnosis of ADH--atypical ductal hyperplasia.

Not cancer, but with my dear departed Mom a breast cancer survivor, I am at high

risk and I am currently taking Tamoxifen, an anti-estrogen, for the next five

years to help prevent breast cancer. I was gene tested and fortunately do not

have the mutated BRACA genes that place women ( and men) at extremely high risk

of breast and ovarian cancer.

[Guest guest]

Jodi,

Thanks for the support and the hugs--I take hugs wherever I can get 'em!

I feel very positive and do not dwell on it. All we can do is try to live a healthy and full lifestyle.

I am fortunate to have a very supportive family and I feel lucky to have found this group--all of you are caring, supportive, sincere and gracious in the face of tough times.

Terry

Re: I need HELP/ Marilyn

Terry,You know so many people that I know (both in real life and online) are going through this bizzare Cancer scare.It is making me question the stars and if I should start looking into some kind of Astrology to figure out what the heck is going on. Someone just mentioned Edgar Cayce to me. I am sending you major happy vibes that all returns well!Such a nuisance to have dangling over our head.Big hugs and stay strong!Jodi> I am also holding my cancer breath... I have had abnormal mammogram results with 2 bilateral biopsies and a diagnosis of ADH--atypical ductal hyperplasia. Not cancer, but with my dear departed Mom a breast cancer survivor, I am at high risk and I am currently taking Tamoxifen, an anti-estrogen, for the next five years to help prevent breast cancer. I was gene tested and fortunately do not have the mutated BRACA genes that place women ( and men) at extremely high risk of breast and ovarian cancer.