question

[Guest guest]

First I want to say that I am glad I stayed on this list, as it is the most

helpful of many that I am on. I went on yahoo last week and signed up for

every list I thought would fit with what I need pertaining to wls. Some have

given no advice, one even just fighting back and forth between 2 people,

seems the list leader made her list just to talk people out of wls and

someone who had it is putting her in her place. Anyway, not the list for me.

I have decided I want to do this surgery. I guess it has been in my mind

for years now, but since I am approaching the cut-off age, I am going to get

cracking and get the process started as soon as I can.

Anyway, I see posts about lactose intollerance and I wanted to ask - is this

just as a result of the surgery? Did you have this before? Is this

something post-ops need to watch out for even if they never had it before?

And, seems to me that during the window of opportunity, one needs to focus on

eating protein or getting it thru shakes (someone mentioned getting it in

liquid form, too and putting into their tea or coffee??) and stay away from

sweets and carbs as much as possible. OK, I understand the reasons for this,

but forgive me, it sounds like another diet, although I understand that once

the weight is lost, it stays off, so this is the difference between that and

a diet. Now, on some lists I am on, some people say they are not observing

this and still eating sweets and have gone on long plateaus and not losing as

much as they should..........while others are luckier and eat whatever they

want and still lose. I hope I don't end up eating what I shouldn't and not

losing. I think MOST of the posts pertaining to this are RNY people, but

some of them seem to be DS, too.

Some people talk about having cravings and eating too much. Some say their

pre-op cravings go away. I guess it is the luck of the draw what kind of

body one has and you don't know till after the surgery.....

Another question - sometimes now I get light-headed if I don't eat, maybe its

low blood sugar, don't know. I wonder if once one gets surgery and gets

light-headed and can't eat as much (or anything just after surgery except

liquids), do you still get light-headed? maybe this is what people refer to

when they talk about nausea?

Just a few thoughts and questions. Thanks to all of you who are willing to

answer.

Maybe those of you who are nurses who go thru this need to become

self-employed as contract " post-wls " nurses for those of us who need that

kind of help? Might be a good thing to consider talking to the Dr. about??

C

[Guest guest]

Hello Laurie,

I am sorry you are going through this, as if it isn't bad enough to have a

sick child, but to have someone think you are the reason for it...that is

just wrong!!! You are not a bad Mom. I think someone is watching to much

TV, the other day I watched a re-run of judging Amy, and the Mom was accused

of making her daughter sick, in the end she was the cause, she was purposely

giving her medicine to cause seizures...that's what it sounds like to me,

that someone is just watching way to much television!!!

After Aspyn passed away, I had someone tell me that losing a child only

happens to bad people, that really hurt to, but I know better!!! I wish you

weren't having to deal with this, and I hope the doc sets whoever this is

straight!!!

Take care, and know that you are NOT a bad mom!!!!!

Wayne, , Gentry and ~Angel Aspyn~

www.aspynblock.com

question

> I am wondering if any of you have had the unfortunate and scary experience

> of having someone think that you are making you child sick. Have any of

you

> been turned into CPS with false allegations? Have any of you been accused

> of not feeding or taking care of your children and that is why they are

sick

> all because their diagnosis' /problems are " so confusing " and many? I

have

> been told that I must be not taking care of my children and that is why

they

> are the way they are. It hurts so EXTREMELY bad that anyone would think

> that! I know that it is not any of our doctors because they are the ones

> who support us and are pleased with the children's progress right now.

The

> pediatrician said that I have absolutely nothing to worry about and that

she

> cannot wait to get the investigative phone call and get this cleared up.

I

> am sorry, I have probably said way too much. I am just wondering if this

> has happened to anyone else or am I just the worst mom out there?

>

> Just hurt!

> Laurie

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Laurie,

There have been several people in this group who have been accused of

this. If you have time you could take a peek at the archives and see

how they have dealt with this.

Some of the same things which make mito so difficult to dx are some of

the same things which are on the " red flag " for child abuse. Even

looking to be the best advocate for you kiddo can cause that stupid

flag to go up. The ones who have spoken out here seem to have

prevailed just by the fact that their kids really are sick and they

really have problems. I think they used the mental trick that the

people who are questioning them were only thinking of trying to do the

best for their kids (no matter if it is frustrating). Yes most of

them said they were hurt and horrified that someone would think this

about them.

Hang in there!

We are for you.

Twana

> I am wondering if any of you have had the unfortunate and scary

experience of having someone think that you are making you child sick.

[Guest guest]

This hasnt happened to me (thank goodness) except by well meaning

strangers suggesting his problems are with me rather than him, but

the doctors have never suspected anything of the sort.

I have been accused of making myslef sick in the past when they were

unable to pin down a diagnosis, however once all this came to light

with my son, that stopped pretty quick.

I do know alot of parents of mito kids have dealt with this

though...

I hope they can give you some insight!

> I am wondering if any of you have had the unfortunate and scary

experience

> of having someone think that you are making you child sick. Have

any of you

> been turned into CPS with false allegations? Have any of you been

accused

> of not feeding or taking care of your children and that is why

they are sick

> all because their diagnosis' /problems are " so confusing " and

many? I have

> been told that I must be not taking care of my children and that

is why they

> are the way they are. It hurts so EXTREMELY bad that anyone would

think

> that! I know that it is not any of our doctors because they are

the ones

> who support us and are pleased with the children's progress right

now. The

> pediatrician said that I have absolutely nothing to worry about

and that she

> cannot wait to get the investigative phone call and get this

cleared up. I

> am sorry, I have probably said way too much. I am just wondering

if this

> has happened to anyone else or am I just the worst mom out there?

>

> Just hurt!

> Laurie

[Guest guest]

Hi Laurie,

I can feel the pain that you are going through. This happened to me over 7

years ago an it still feels like yesterday. My son was diagnosed with

complex I/III at the age of two.He also had hypothyroidism,

hypogammaglobulinemia(getting IVIG every two weeks since 3months old) No

other kids were anything like him, and most Dr. had never heard of

mitochondrial disease. It was a pediatrician in my son's Dr. that filed a

report against me. The report said I was the cause of 's problems, he

had no diagnosis, and that he had unnecessary surgeries. Now the only

surgeries ever had were G/J tube placed when he was 3months old,

tonsils, adenoids,(which were removed after sleep study showed obstructed

apnea), mastoidectomy, and complete spinal fusion. If you read his records

all of those were necessary. The worst part of it was I was a social worked

for DSS at the time the Dr. filed the report. I walked in on a Monday

morning getting called in to an office to discuss the report. I had to give

them 's Dr. at Boston Children's. They paged 5 different Dr.s an they

all called DSS back with in 15min. They said nothing in that report was

true, and DSS didn't support the report. Even though I got a lot of support

no one will ever understand what I went through. Even 7 yrs late I am still

haunted by the experience. It makes you feel awful having someone thinking

your doing this to your own child. You can e-mail me privately if you want

to talk. Being a Social worker myself I also know the system fairly well.

Take care. I'm sorry you have to be going through this. Your children need

you, and you have to deal with this stupidity.

Lori

question

> I am wondering if any of you have had the unfortunate and scary experience

> of having someone think that you are making you child sick. Have any of

you

> been turned into CPS with false allegations? Have any of you been accused

> of not feeding or taking care of your children and that is why they are

sick

> all because their diagnosis' /problems are " so confusing " and many? I

have

> been told that I must be not taking care of my children and that is why

they

> are the way they are. It hurts so EXTREMELY bad that anyone would think

> that! I know that it is not any of our doctors because they are the ones

> who support us and are pleased with the children's progress right now.

The

> pediatrician said that I have absolutely nothing to worry about and that

she

> cannot wait to get the investigative phone call and get this cleared up.

I

> am sorry, I have probably said way too much. I am just wondering if this

> has happened to anyone else or am I just the worst mom out there?

>

> Just hurt!

> Laurie

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Hey Guys,

I wanted to know if I am crazy or if this happens to anyone else. If I

don't take time to rest and push myself for a couple of days, I feel

like major crap and have an increase in symptoms. If I rest for a

couple of days the symptoms become minimal and I am back at it in the

vicious circle pushing myself to get things done then back in the same

downward spiral.

What do you guys think.

Terri G.

[Guest guest]

Hey Guys,

I wanted to know if I am crazy or if this happens to anyone else. If I

don't take time to rest and push myself for a couple of days, I feel

like major crap and have an increase in symptoms. If I rest for a

couple of days the symptoms become minimal and I am back at it in the

vicious circle pushing myself to get things done then back in the same

downward spiral.

What do you guys think.

Terri G.

[Guest guest]

Yeah, Terri, it's the merry-go-round effect. I was really luck this summer in the respect that my employer cut our hours, hurt my pocketbook SEVERLY, however, I felt great!! Now, we're back to normal hours and my symptoms are starting to talk to me. I do the same dance. I think most of us do. When I see my house needs more attention and I add a good cleaning binge to my normal level, well, watch out!! I try to remember the spoon story that was once posted on here and save up my spoons for big days of more than normal activities.

My dilemma is that my employer would like me to work full time, I work about 30 hr weeks now. Winter is coming. I know with the return of the cold, my pain level is higher. How about you?? On the other hand, I really could use more money. I have 2 kids in college right now and it's breaking me big time. But at what cost?? I worry that this will be too much for me. It has in the past, hence the part time work. Well, take it slower, listen to your body is my suggestion to you. Bonnie B.See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Yeah, Terri, it's the merry-go-round effect. I was really luck this summer in the respect that my employer cut our hours, hurt my pocketbook SEVERLY, however, I felt great!! Now, we're back to normal hours and my symptoms are starting to talk to me. I do the same dance. I think most of us do. When I see my house needs more attention and I add a good cleaning binge to my normal level, well, watch out!! I try to remember the spoon story that was once posted on here and save up my spoons for big days of more than normal activities.

My dilemma is that my employer would like me to work full time, I work about 30 hr weeks now. Winter is coming. I know with the return of the cold, my pain level is higher. How about you?? On the other hand, I really could use more money. I have 2 kids in college right now and it's breaking me big time. But at what cost?? I worry that this will be too much for me. It has in the past, hence the part time work. Well, take it slower, listen to your body is my suggestion to you. Bonnie B.See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Terri,

I have the same thing with working full time and all the changes there. Then I try to get a bunch of things done around here and get them done and I go through the same thing where I can barely make it to work and do things around here. I was wondering what was wrong with me.

KatSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Terri,

I have the same thing with working full time and all the changes there. Then I try to get a bunch of things done around here and get them done and I go through the same thing where I can barely make it to work and do things around here. I was wondering what was wrong with me.

KatSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Terri, You explained what happens to me to the "t". Rest is very important, I find that Knapp's help. Another issue is eating right. If I eat a heavy meal for dinner (rather than lunch) I will pay the price. Pizza and pasta are the worst for me, even if I have small portions. Pay serious attention to your body signals and rest as often as you can. Rickmosaicgirl1 wrote: Hey Guys,I wanted to know if I am

crazy or if this happens to anyone else. If Idon't take time to rest and push myself for a couple of days, I feellike major crap and have an increase in symptoms. If I rest for acouple of days the symptoms become minimal and I am back at it in thevicious circle pushing myself to get things done then back in the samedownward spiral.What do you guys think.Terri G.

Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out.

[Guest guest]

wanted to know if I am crazy or if this happens to anyone else. If Idon't take time to rest and push myself for a couple of days, I feellike major crap and have an increase in symptoms. If I rest for acouple of days the symptoms become minimal and I am back at it in thevicious circle pushing myself to get things done then back in the samedownward spiral.Terri If you're crazy so am I! Well everyone knew that anyway. I'm resting & skipping the wedding rehersal dinner last night so I can make the wedding today. I can usually do 2 days of stuff but 3 will put me down for days. I went to the yarn shop Thursday & out to eat so I guess what I'm trying to say is I have to pace myself too. Especially if I haul the walker down the steps by myself like I did Thursday. Gotta catch some sleep before I blow the stink off me & head out tomorrow.

Catch up with everyone later.Join our Sock Challenge for Orphans in Kazakhstan - 265 pairs needed by 9/15/07 http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

Check out the hottest 2008 models today at Yahoo! Autos.

[Guest guest]

Terri & ,

I believe this is just one of the bad effects from the

Sarcoidosis. I am the same way.....if I have to go to

Walmart, or get groceries, I am done for the day. If I have

somewhere to go some evening, then I have to lay around

and rest all day........it is like you have a pint of energy and

when you use it, it is all gone! So you have to learn to use

it wisely and sparingly........sad, but true. Listen to your

body-----I know it is hard to do and I am still struggling with

it because I have always been a person that is busy nearly

24 hours a day and it is really difficult to sit around and do

nothing----but ..........that is what our body needs! Hang in

there, we are all in the same boat.

Hugs,

Darlene

NS Co-Owner/Moderator

[Guest guest]

,

It is funny that the first two posts I read were responses to my

question. I have been feeling pretty rotten lately and it makes me feel

better to know there are others in the same boat.

It is funny you talk about riding your recliner - I was thinking about

buying one for my husband as a suprise, but I realized it I bought one

it would be for me. Pretty selfish huh?

Well, thanks for your thoughts.

Terri G.

[Guest guest]

Kat,

Wow, I had no idea so many people had the same problem. The first 3

posts I read were in response to my question. I have a hard time just

getting my house work done let alone working full thime. I will say a

prayer for you and am very inspired by the fact the you are able to

work. I miss it greatly.

You sound like I did before I stopped working. I used to hide in the

bathroom and sleep on the toilet. If anyone came to check on me, I

would tell them I had a tummy ache and then would go back in the office

(cause they woke me up).

Thanks for everything.

Terri G.

[Guest guest]

Bonnie,

I feel like crying - I had no idea that so many people were in the same

boat. I am not crying because I am sad, but because I am relieved and

not so alone in being sick.

I agree with the increase in pain due to the weather changes. My son

Jeff and his wife , took my to eat at Olive Garden last night.

When I went to get up, I was all hunched over trying to get my knees to

work. They were really concerned but I just told them it was normal.

My wrist is swollen and painful as usual and right now except for lyrica

for the nerve pain, I am only using Tylenol arthritis.

I was fortunate enough to get approved for disability under a private

disability policy but they only pay 60% of the salary then I pay taxes

on it so it is not very much when I get it. I am fortunate enough

though that I don't have to. Other folks on this site are not so lucky.

I am lucky that my children are grown and out of the house and very

self-sufficient. God put two beautiful wives in their lives and they

are very good to me. My husband is working in Hawaii until November so

they check on me quite often.

Well, thanks for listening.

Terri G.

>

> Yeah, Terrdi, it's the merry-go-round effect. I was really luck this

summer

> in the respect that my employer cut our hours, hurt my pocketbook

SEVERLY,

> however, I felt great!! Now, we're back to normal hours and my

symptoms are

> starting to talk to me. I do the same dance. I think most of us do.

When I see my

> house needs more attention and I add a good cleaning binge to my

normal

> level, well, watch out!! I try to remember the spoon story that was

once posted

> on here and save up my spoons for big days of more than normal

activities.

> My dilemma is that my employer would like me to work full time, I work

> about 30 hr weeks now. Winter is coming. I know with the return of the

cold, my

> pain level is higher. How about you?? On the other hand, I really

could use

> more money. I have 2 kids in college right now and it's breaking me

big time.

> But at what cost?? I worry that this will be too much for me. It has

in the

> past, hence the part time work. Well, take it slower, listen to your

body is

> my suggestion to you. Bonnie B.

>

>

>

> ************************************** See what's new at

http://www.aol.com

>

[Guest guest]

,

Your pattern is like mine. Two days of trying to be normal and then my

goose is cooked.

Hope you enjoy the wedding.

Terri G.

>

> wanted to know if I am crazy or if this happens to anyone else. If I

> don't take time to rest and push myself for a couple of days, I feel

> like major crap and have an increase in symptoms. If I rest for a

> couple of days the symptoms become minimal and I am back at it in the

> vicious circle pushing myself to get things done then back in the same

> downward spiral.

> Terri

> If you're crazy so am I! Well everyone knew that anyway. I'm resting &

skipping the wedding rehersal dinner last night so I can make the

wedding today. I can usually do 2 days of stuff but 3 will put me down

for days. I went to the yarn shop Thursday & out to eat so I guess what

I'm trying to say is I have to pace myself too. Especially if I haul the

walker down the steps by myself like I did Thursday. Gotta catch some

sleep before I blow the stink off me & head out tomorrow. Catch up with

everyone later.

>

>

> Join our Sock Challenge for Orphans in Kazakhstan - 265 pairs needed

by 9/15/07

> http://groups. yahoo.com/ group/Mittens_ for_Akkol/

>

>

> grannylunatic@...

>

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

> Check out the hottest 2008 models today at Yahoo! Autos.

>

[Guest guest]

Rick,

What an over whelming response to a question I thought no one would

answer. I sleep aroudn 2 hours each after noon. I never thought about

how meals affect things. I will have to keep an eye on that.

Thank you so much for your concern

Terri

>

> Hey Guys,

>

> I wanted to know if I am crazy or if this happens to anyone else. If I

> don't take time to rest and push myself for a couple of days, I feel

> like major crap and have an increase in symptoms. If I rest for a

> couple of days the symptoms become minimal and I am back at it in the

> vicious circle pushing myself to get things done then back in the same

> downward spiral.

>

> What do you guys think.

>

> Terri G.

>

>

>

>

>

>

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

> Be a better Heartthrob. Get better relationship answers from someone

who knows.

> Yahoo! Answers - Check it out.

>

[Guest guest]

Terri,

If you don't have a recliner you should really invest in one. No, that wouldn't be selfish of you at all...your comfort is very important! I had purchased mine a year and a half before I became sick and I hardly ever used it, but after the surgical biopsy on my spinal cord it is the only place I am truly comfortable. I take a 2 hour nap each afternoon also...so you are definitely not alone. I sleep about 6-1/2 to 8 hours a night and within several hours of getting out of bed for the day I am back asleep for several hours in my recliner. I definitely have to divy up my energy...just like Darlene said...store it up if you know there is something you have to do later in the day or the next day.

Hang in there!

Hugs,

in UT

It is funny you talk about riding your recliner - I was thinking about buying one for my husband as a suprise, but I realized it I bought one it would be for me. Pretty selfish huh?

[Guest guest]

Terri,

If you don't have a recliner you should really invest in one. No, that wouldn't be selfish of you at all...your comfort is very important! I had purchased mine a year and a half before I became sick and I hardly ever used it, but after the surgical biopsy on my spinal cord it is the only place I am truly comfortable. I take a 2 hour nap each afternoon also...so you are definitely not alone. I sleep about 6-1/2 to 8 hours a night and within several hours of getting out of bed for the day I am back asleep for several hours in my recliner. I definitely have to divy up my energy...just like Darlene said...store it up if you know there is something you have to do later in the day or the next day.

Hang in there!

Hugs,

in UT

It is funny you talk about riding your recliner - I was thinking about buying one for my husband as a suprise, but I realized it I bought one it would be for me. Pretty selfish huh?

[Guest guest]

Terri,I can't push myself anymore but when I did I would feel horrible afterwards. Finally, my pushing came to an end and I had to go out on medical leave. It is so important to listen to your body. God Bless you always,Beckymosaicgirl1 wrote: Hey Guys, I wanted to know if I am crazy or if this happens to anyone else. If I don't take time to rest and push myself for a couple of days, I feel like major crap and have an increase in symptoms. If I rest for a couple of days

the symptoms become minimal and I am back at it in the vicious circle pushing myself to get things done then back in the same downward spiral. What do you guys think. Terri G.

Shape Yahoo! in your own image. Join our Network Research Panel today!

[Guest guest]

Terri,I can't push myself anymore but when I did I would feel horrible afterwards. Finally, my pushing came to an end and I had to go out on medical leave. It is so important to listen to your body. God Bless you always,Beckymosaicgirl1 wrote: Hey Guys, I wanted to know if I am crazy or if this happens to anyone else. If I don't take time to rest and push myself for a couple of days, I feel like major crap and have an increase in symptoms. If I rest for a couple of days

the symptoms become minimal and I am back at it in the vicious circle pushing myself to get things done then back in the same downward spiral. What do you guys think. Terri G.

Shape Yahoo! in your own image. Join our Network Research Panel today!

[Guest guest]

Terri,

Well, you're a fortunate one to have family that love you and take you out for dinner. I know how embarrassing it can be to get up and try to walk when your parts are just not going to be cooperative. I don't have ns as bad as many here on this web site do, thank the Lord, but I do have some bad days. Walk like I'm a 100 yrs old sometimes. But, I'm walking.

It's good that you are able to receive disability. I'm not at that point yet, hope I never have to. But, it's there for people who need it.

About the recliner. I basically took possession of the one I bought my husband many years ago. It came in handy when I had rotator cuff surgery. It's now my official reading chair. Probably could use a new one. Take care of yourself, Bonnie BSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Terri,

Well, you're a fortunate one to have family that love you and take you out for dinner. I know how embarrassing it can be to get up and try to walk when your parts are just not going to be cooperative. I don't have ns as bad as many here on this web site do, thank the Lord, but I do have some bad days. Walk like I'm a 100 yrs old sometimes. But, I'm walking.

It's good that you are able to receive disability. I'm not at that point yet, hope I never have to. But, it's there for people who need it.

About the recliner. I basically took possession of the one I bought my husband many years ago. It came in handy when I had rotator cuff surgery. It's now my official reading chair. Probably could use a new one. Take care of yourself, Bonnie BSee what's new at AOL.com and Make AOL Your Homepage.