Alice..Thanks for all your help..great ideas...Long post

[Guest guest]

Hi,

Okay Alice..no fair. :-).....I didn't realize how down I was feeling

about where I am at, until you wrote such a sensitive and caring

post. :-) Thank you so much. I am in the position of not being able

to keep up with the list the way I would like to and have been in

such a precarious position for the past 6 months that I rarely read

more than what applies to me. So I don't really know everyone on the

list and what their situation is. I forget that many have family

members that also have health problems.

I am sorry to hear about your Mom and your son. I can't imagine how

devastating it must be to have so many of concern to you, when you

are sick yourself. Well, I can imagine it to some extent having had

illness in our family, but not something chronic that didn't

resolve. I guess that seems to be a difference in my mind. YOu have

a lot on your plate Alice, and I appreciate all the more your efforts

to be of help to me. Your Mother and son are lucky to have you. But

I bet they know that already. :-)

Thank you so much for the 'food ideas'. I didn't realize until you

actually started " thinking " about what I could do, that I have been

feeling so stuck. Today feeling stable enough with liquids to be

predictable so I feel willing to try some new things. I have managed

a milk shake [no fat yogurt, no fat milk] if I sip it very slowly. I

also was able to sip home made broth yesterday so that was all

encouraging.

Having done that, I could try some of the ideas you have

presented. I have never been a big fan of Ensure, only because I felt

the nutrition was synthetic vitamins which I have never been a big

fan of, but how can I argue with success stories? [g]

I also have some of that protein powder in the house which I have

not yet been ready to try again, but I can surely add a little to the

milk shake and see how that goes.

I LOVED your recipes. Really original and creative. At first I

thought oh no, I can't do fat in peanut butter, but I have bought

that reduced fat peanut butter before and had forgotten about it. I

bet I have some in the house. I could try that. Fat seems to be the

biggest trigger that causes the most problems. Paradoxically, it

seems to be the thing that I might be the most deficient in. *sigh*

Oh, and the vegetable drinks...I almost forgot. I think I might be

able to manage that. Thanks for the reminder, I haven't been doing

that as much lately. Sometimes the concentrated raw juices are a

little too much, but I certainly can try a little every day.

I didn't realize what sleep apnea was. Geez, I guess I might be a

candidate for that after all. I did have a sleep study done about 7

years ago and they thought I had disordered sleep but the

recommendations were only for sleeping pills. I found that

discouraging and after the effort it took to get the sleep study

done, I just dropped it at that point and tried to deal with it on my

own. I don't fall alseep in the midst of activity during the day

though. I think I can get another sleep study done. My mito doc is

Dr Korson in Boston, thanks to people here on the list who

recommended him. I have an appt coming up with him soon.

Thank you Alice, for putting on your " thinking " cap on my behalf. I

can only hope that I can recover and do the same for someone else.

:-)

Adam

> Hi Adam,

>

> I know you are facing an uphill battle and you are giving it all

you can. It's a tough road to be on and I can understand how you are

feeling. I gave some thought to your needs with diet and I'm going

to mention Ensure here as I've seen it's use in two family members

and I know that it was a factor in their improvements. My son who is

37 has this now between meals so he drinks it 3 times a day and has

three regular soft meals, but there was a time when Ensure was all he

could manage. He was getting no nourishment from food because of

cyclonic vomiting and he drank it 6 times a day. He's come a long

way on it. When my mother was unable to digest food and was in

grave condition, I introduced Ensure to her and it gave her the

nourishment she needed for her condition to improve. If you haven't

tried it, it might be worth it. You may need to introduce it to your

system slowly.

>

> If you are prone to sugar problems, there are other nutritional

beverages that you can mix which are high in protein and low in

carbs. I'll copy a couple home made ones here so that you can see

if this would be something you can use to restore your energy.

Another idea is to take soft foods - eggs for example - cook them and

puree them in the blender so that you might be able to tolerate

them. Eggs are high in protein. The health food stores have protein

drinks that are low in sugar and usually have a soy content. This

might be an option if someone could get to the store and purchase

some for you. With all of these ideas, if you are brave enough to

try them and that would be your decision totally, I'd start very

slowly - probably no more than 4 oz at a time but maybe spaced out at

about every 2 to 3 hours. These are just ideas of course and since

I'm not there and don't know first hand what you are facing and I'm

not a doctor, it's just something I put together in the hopes of

providing you with some assistance. You may have already tried

something similar. I do hope you have a good blender as it sounds as

if you may need to use it for a while. My mind keeps sending me a

message to remember vegetable juice too.

>

> Before I send the recipies, I want to mention your sleep comments.

You sound exactly like a person with Sleep Apnea and yes - this may

mean CPAP for you. A person with sleep apnea very often can get to

sleep but can't stay asleep. The wake up in the middle of their

sleep period and can't get back to sleep. They also need frequent

naps in the day - fall off to sleep with activity in full play around

them. With CPAP - you might wake up in the middle of your sleep but

you will be able to do what you need to do for dietary reasons and

then go back to sleep with your CPAP. The CPAP with the right

pressures will allow you to get sound sleep and feel rested. Sleep

is the body's way of restoring energy and when you are not sleeping

as you should, your body can't replace what it needs. It's amazing

how much better a person feels who has CPAP and uses it. Some people

complain about the head gear but with patience, it becomes easy to

adjust to and once you've experienced the sleep pattern that gives

you rest, you start to feel better and bodily systems work better.

Do you remember having any dreams? Oxygen is given with CPAP only

if your stats are low and this is tested with a pulse ox meter which

you wear on your finger overnight. This is all done during the sleep

study and is quite simple. They only need 2 hours of sleep to

determine whether you are a candidate for CPAP or BiPap and/or oxygen

supplementation. I can honestly say that my CPAP has been a vital

factor for me. There is no way I would consider trying to sleep

without it. I did the night of my last surgery and woke up gasping.

It was a terrible feeling and I don't wish to do that again any time

soon.

>

> Hopefully some of this makes sense and you can use some of these

suggestion. I'm sure you are going to see more from others. We are

putting our thinking caps on to see if we can help and I hope one of

us happens on that will do the trick. Please - as hard as it is -

try to keep your chin up. We have to be strong and fight this nasty

disease.

>

> Alice

>

> Recipes follow:

>

> Hawaiian Peanut Butter Power Shake

>

> Makes 1 serving.

>

> 1/2 cup pineapple tidbits in juice, drained and juice reserved

> 1/3 cup reserved pineapple juice (use orange juice if you don't

have enough

> liquid from the pineapple tidbits)

> 1/4 cup nonfat vanilla yogurt

> 1 Tbsp reduced-fat peanut butter

> 1 tsp honey

> 1/4 tsp coconut flavoring

> 1/2 tsp toasted wheat germ (optional)

>

> Combine all ingredients in the blender and process until smooth.

Add 1 ice cube and blend until the ice is crushed; serve immediately.

>

> Nutritional Information (per serving): 248 Cal; 7 g Total Fat (1 g

Sat Fat); 41 g Carb; 00 mg Cholesterol; 137 mg Sodium; 9 g Protein; 2

g Dietary Fiber.

>

> Dietary Exchanges: 1/2 Starch/Bread; 1 Protein; 1-1/2 Fruit; 1/2

Milk; 1 Fat.

>

>

>

>

>

>

>

> Kiwifruit Buttermilk Buster

>

> Makes 4 servings.

>

> 3 cups low-fat buttermilk

>

> 2 kiwifruit, pared and sliced

>

> Ice cubes

>

> Pour buttermilk into blender or food processor.

Peel kiwifruit and add to blender. Process until smooth; pour over

ice cubes and serve.

>

> Nutritional Information (per 3/4 cup serving):

101 Cal; 2 g Total Fat (1 g Sat Fat); 14 g Carb; 6 mg Cholesterol;

194 mg Sodium; 404 mg Potassium; 7 g Protein; 1 g Fiber.

>

> Dietary Exchanges: 1/2 Fruit; 1/2 Nonfat Milk.

>

>

[Guest guest]

Adam

You might want to ask your doctor about trying MCT oil. It is a medium chain

oil which is easier to digest by many. It is expensive, but it seems to be

what controls and helps our lives.

laurie

>

> Reply-To:

> Date: Sun, 19 Sep 2004 18:35:49 -0000

> To:

> Subject: Alice..Thanks for all your help..great ideas...Long post

>

> Hi,

>

> Okay Alice..no fair. :-).....I didn't realize how down I was feeling

> about where I am at, until you wrote such a sensitive and caring

> post. :-) Thank you so much. I am in the position of not being able

> to keep up with the list the way I would like to and have been in

> such a precarious position for the past 6 months that I rarely read

> more than what applies to me. So I don't really know everyone on the

> list and what their situation is. I forget that many have family

> members that also have health problems.

>

> I am sorry to hear about your Mom and your son. I can't imagine how

> devastating it must be to have so many of concern to you, when you

> are sick yourself. Well, I can imagine it to some extent having had

> illness in our family, but not something chronic that didn't

> resolve. I guess that seems to be a difference in my mind. YOu have

> a lot on your plate Alice, and I appreciate all the more your efforts

> to be of help to me. Your Mother and son are lucky to have you. But

> I bet they know that already. :-)

>

> Thank you so much for the 'food ideas'. I didn't realize until you

> actually started " thinking " about what I could do, that I have been

> feeling so stuck. Today feeling stable enough with liquids to be

> predictable so I feel willing to try some new things. I have managed

> a milk shake [no fat yogurt, no fat milk] if I sip it very slowly. I

> also was able to sip home made broth yesterday so that was all

> encouraging.

>

> Having done that, I could try some of the ideas you have

> presented. I have never been a big fan of Ensure, only because I felt

> the nutrition was synthetic vitamins which I have never been a big

> fan of, but how can I argue with success stories? [g]

>

> I also have some of that protein powder in the house which I have

> not yet been ready to try again, but I can surely add a little to the

> milk shake and see how that goes.

>

> I LOVED your recipes. Really original and creative. At first I

> thought oh no, I can't do fat in peanut butter, but I have bought

> that reduced fat peanut butter before and had forgotten about it. I

> bet I have some in the house. I could try that. Fat seems to be the

> biggest trigger that causes the most problems. Paradoxically, it

> seems to be the thing that I might be the most deficient in. *sigh*

>

> Oh, and the vegetable drinks...I almost forgot. I think I might be

> able to manage that. Thanks for the reminder, I haven't been doing

> that as much lately. Sometimes the concentrated raw juices are a

> little too much, but I certainly can try a little every day.

>

> I didn't realize what sleep apnea was. Geez, I guess I might be a

> candidate for that after all. I did have a sleep study done about 7

> years ago and they thought I had disordered sleep but the

> recommendations were only for sleeping pills. I found that

> discouraging and after the effort it took to get the sleep study

> done, I just dropped it at that point and tried to deal with it on my

> own. I don't fall alseep in the midst of activity during the day

> though. I think I can get another sleep study done. My mito doc is

> Dr Korson in Boston, thanks to people here on the list who

> recommended him. I have an appt coming up with him soon.

>

> Thank you Alice, for putting on your " thinking " cap on my behalf. I

> can only hope that I can recover and do the same for someone else.

>

> :-)

> Adam

>

>

>

>

>

>

>> Hi Adam,

>>

>> I know you are facing an uphill battle and you are giving it all

> you can. It's a tough road to be on and I can understand how you are

> feeling. I gave some thought to your needs with diet and I'm going

> to mention Ensure here as I've seen it's use in two family members

> and I know that it was a factor in their improvements. My son who is

> 37 has this now between meals so he drinks it 3 times a day and has

> three regular soft meals, but there was a time when Ensure was all he

> could manage. He was getting no nourishment from food because of

> cyclonic vomiting and he drank it 6 times a day. He's come a long

> way on it. When my mother was unable to digest food and was in

> grave condition, I introduced Ensure to her and it gave her the

> nourishment she needed for her condition to improve. If you haven't

> tried it, it might be worth it. You may need to introduce it to your

> system slowly.

>>

>> If you are prone to sugar problems, there are other nutritional

> beverages that you can mix which are high in protein and low in

> carbs. I'll copy a couple home made ones here so that you can see

> if this would be something you can use to restore your energy.

> Another idea is to take soft foods - eggs for example - cook them and

> puree them in the blender so that you might be able to tolerate

> them. Eggs are high in protein. The health food stores have protein

> drinks that are low in sugar and usually have a soy content. This

> might be an option if someone could get to the store and purchase

> some for you. With all of these ideas, if you are brave enough to

> try them and that would be your decision totally, I'd start very

> slowly - probably no more than 4 oz at a time but maybe spaced out at

> about every 2 to 3 hours. These are just ideas of course and since

> I'm not there and don't know first hand what you are facing and I'm

> not a doctor, it's just something I put together in the hopes of

> providing you with some assistance. You may have already tried

> something similar. I do hope you have a good blender as it sounds as

> if you may need to use it for a while. My mind keeps sending me a

> message to remember vegetable juice too.

>>

>> Before I send the recipies, I want to mention your sleep comments.

> You sound exactly like a person with Sleep Apnea and yes - this may

> mean CPAP for you. A person with sleep apnea very often can get to

> sleep but can't stay asleep. The wake up in the middle of their

> sleep period and can't get back to sleep. They also need frequent

> naps in the day - fall off to sleep with activity in full play around

> them. With CPAP - you might wake up in the middle of your sleep but

> you will be able to do what you need to do for dietary reasons and

> then go back to sleep with your CPAP. The CPAP with the right

> pressures will allow you to get sound sleep and feel rested. Sleep

> is the body's way of restoring energy and when you are not sleeping

> as you should, your body can't replace what it needs. It's amazing

> how much better a person feels who has CPAP and uses it. Some people

> complain about the head gear but with patience, it becomes easy to

> adjust to and once you've experienced the sleep pattern that gives

> you rest, you start to feel better and bodily systems work better.

> Do you remember having any dreams? Oxygen is given with CPAP only

> if your stats are low and this is tested with a pulse ox meter which

> you wear on your finger overnight. This is all done during the sleep

> study and is quite simple. They only need 2 hours of sleep to

> determine whether you are a candidate for CPAP or BiPap and/or oxygen

> supplementation. I can honestly say that my CPAP has been a vital

> factor for me. There is no way I would consider trying to sleep

> without it. I did the night of my last surgery and woke up gasping.

> It was a terrible feeling and I don't wish to do that again any time

> soon.

>>

>> Hopefully some of this makes sense and you can use some of these

> suggestion. I'm sure you are going to see more from others. We are

> putting our thinking caps on to see if we can help and I hope one of

> us happens on that will do the trick. Please - as hard as it is -

> try to keep your chin up. We have to be strong and fight this nasty

> disease.

>>

>> Alice

>>

>> Recipes follow:

>>

>> Hawaiian Peanut Butter Power Shake

>>

>> Makes 1 serving.

>>

>> 1/2 cup pineapple tidbits in juice, drained and juice reserved

>> 1/3 cup reserved pineapple juice (use orange juice if you don't

> have enough

>> liquid from the pineapple tidbits)

>> 1/4 cup nonfat vanilla yogurt

>> 1 Tbsp reduced-fat peanut butter

>> 1 tsp honey

>> 1/4 tsp coconut flavoring

>> 1/2 tsp toasted wheat germ (optional)

>>

>> Combine all ingredients in the blender and process until smooth.

> Add 1 ice cube and blend until the ice is crushed; serve immediately.

>>

>> Nutritional Information (per serving): 248 Cal; 7 g Total Fat (1 g

> Sat Fat); 41 g Carb; 00 mg Cholesterol; 137 mg Sodium; 9 g Protein; 2

> g Dietary Fiber.

>>

>> Dietary Exchanges: 1/2 Starch/Bread; 1 Protein; 1-1/2 Fruit; 1/2

> Milk; 1 Fat.

>>

>>

>>

>>

>>

>>

>>

>> Kiwifruit Buttermilk Buster

>>

>> Makes 4 servings.

>>

>> 3 cups low-fat buttermilk

>>

>> 2 kiwifruit, pared and sliced

>>

>> Ice cubes

>>

>> Pour buttermilk into blender or food processor.

> Peel kiwifruit and add to blender. Process until smooth; pour over

> ice cubes and serve.

>>

>> Nutritional Information (per 3/4 cup serving):

> 101 Cal; 2 g Total Fat (1 g Sat Fat); 14 g Carb; 6 mg Cholesterol;

> 194 mg Sodium; 404 mg Potassium; 7 g Protein; 1 g Fiber.

>>

>> Dietary Exchanges: 1/2 Fruit; 1/2 Nonfat Milk.

>>

>>

>

>

>

>

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