Throwing in the towel

[Guest guest]

Well, I can say for sure that I have had those days when I sit and ask myself, "why the hell does this have to happen to me?" or "can't I just be healthy for once, why does life have to be so difficult?" I've been there. And to be honest, I don't know the answer. But I can tell you what I do to get my mind back in a positive place. The first thing I do is remind myself of one of my roommates in college. He was born a healthy strong athletic young boy. He played junior hockey and football. One day on the way home from hockey practice he started feeling very sick. His parents took him home, and kept a close eye. After about 2 hours, he was over heating and losing consciousness. They rushed him to the hospital and immediately began treating him for meningitis. They saved his life! But not without a cost. When he woke up, he realized he had no legs form the knees down, and only part of one hand. The meningitis had attacked his body and nearly killed him. He was about 8 years old at the time. When I met him, he was in college, doing things no one would have ever thought he'd be able to.

I know this story may sound obscure, but I think of him all the time. He has such a great attitude and never let his disabilities hold him back. In fact, he nicknamed himself "Mini" since he's so short without his prosthetics. He even has a sense of humor about his ailments. Now that isn't fair. For such a young person to have to deal with so much. Then I remind myself that Mini is one of many. And as dramatic as it sounds, I think of poor starving children, homeless people, people with terminal cancer, AIDS, etc. And I remind myself, I'm not dying. I might be suffering a bit, but I have options. There are things that can be done to allow me to live a basically normal life. That's what keeps me going. I remind myself that there are so many people out there dealing with things that I couldn't dream of having to deal with.

We all have a tendency to think of ourselves as invincible. "Nothing like that will ever happen to me." Well, things happen to everyone at some point in their life, and I thank God that the ailment I'm dealing with is not going to keep me from ever running again, or playing football again, or doing all the things I like to do. It may keep me down for a little while, but once I have surgery, or get treatment, in a sense, I can go along my merry way. Except I won't take such simple things as being able to swallow for granted ever again.

I hope this helps. Hang in there, stay strong, weigh out your options. It seems as though your at a point where you need to take the next step and have some treatment for the condition. I know its scary, it is for all of us, but I think you'll be much happier once you take that step.

GOOD LUCK!

Mike

[Guest guest]

I know the feeling I have 5 kids all married and 9 grandkids When they all come over for a holiday I cook for a week I make things they like And I don't mind it But when the day comes I sit and watch them eat EVERY TIME I sit with my ensure or slimfast I hate getting spasms anytime anyplace I worry about heart burn what is that doing to my "E" BUT... this too shall pass.... Look at those good days.... When the kids do something cute ....something funny... when you can eat that ice cream or donut We all have good days Maybe not perfect maybe not often But they do come Keep the faith write again and again if need be from NJ

-- throwing in the towel

Hey that are in my shoes.. This disorder can make a good person very unsure of alot of things and thats me right now... Thanks for listening.. your feed back is greatly needed and appreciated... teary tania

[Guest guest]

tania wrote:

.... I have been getting real depressed...

We know how you feel this is common on this

list. There is light after the darkness. Please hang in there and

don't blame yourself. Don't try to find a reason you deserve it. It is

like the question, is it better to suffer justly or unjustly?

Personally, I would rather suffer unjustly and not have to deal with

that I deserve to suffer.

... My family doesnt get the whole A thing...

This is also common. There are sites for other

diseases that deal with treating the family. I am short on time so I

can't find one right now.

Beauty is not the materials and tools an artist uses. Beauty is what

the artist creates with the materials and tools at hand. Tania, you are

the artist. Achalasia is one of things from which you create beauty. I

know you are creating beauty I hope you are finding some joy in it.

, are you out there? What is that link to that blind painter?

notan

[Guest guest]

Tania, I can't add anything new to what others have said but

would like to recommend a book to you. I am sure with 6

children you don't have a lot of time to read, but please try

to read "When God Doesn't Make Sense" by Dr. Dodson.

Big hugs,

Maggie

[Guest guest]

Hi Tania,

I’m sorry to hear that you’re having

such a hard time. We all understand. You are not alone. It is

especially tough since not many have any understanding of what achalasia

is. For your family, print off the Achalasia Pamphlet that Joan made.

If I did it rrectly… (which is unlikely! J ) I put it as an

attachment to this email. It is a great source for others to read, and

see what you’re going through.

This is all going to get better for you

Tania. Its just a matter of time. Keep posting, we’re here for you.

in BC

throwing in

the towel

Hey all...I have been having a really rough time

lately.. I actually

tried to post yesturday.. I sat here crying like a

baby while i was

writing and than for some strange reason my post

didnt post.. I have

been getting real depressed.. I had my mom and her

husband over for

dinner the other night.. I slaved over the stove

and like always i

couldnt eat.. I tried and it was so bad i was in

the bathroom

throwing up for about 15 minutes.. I hate

cooking.. I hate not being

able to enjoy all the things i used to love..

FOOD!!! Now I havent

been able to keep water down..Its getting scary

for me and I feel so

alone.. My family doesnt get the whole A thing..

If i could give up

i would but I have 6 angels that need me and that

scares me too.. im

so scared of something going wrong and leaving

them is my biggest

fear.. I soemtimes find myself just crying like i

was a new born and

i cant explain to my husband or anyone else what

my problem is.. Has

anyone ever wondered why this has happened to

you.. Im there i ask

myself everyday what did i do to deserve this.. I

dont think ill evr

know... sorry to go on but I know you all

understand the bad days

and i just need support from people that are in my

shoes.. This

disorder can make a good person very unsure of

alot of things and

thats me right now... Thanks for listening.. your

feed back is

greatly needed and appreciated... teary tania

[Guest guest]

What a great email.

Thanks Mike.

Re: throwing

in the towel

Well,

I can say for sure that I have had those days when I sit and ask myself,

" why the hell does this have to happen to me? " or " can't I

just be healthy for once, why does life have to be so difficult? "

I've been there. And to be honest, I don't know the answer. But I

can tell you what I do to get my mind back in a positive place. The first

thing I do is remind myself of one of my roommates in college. He was

born a healthy strong athletic young boy. He played junior hockey and

football. One day on the way home from hockey practice he started feeling

very sick. His parents took him home, and kept a close eye. After

about 2 hours, he was over heating and losing consciousness. They rushed

him to the hospital and immediately began treating him for meningitis.

They saved his life! But not without a cost. When he woke up, he

realized he had no legs form the knees down, and only part of one hand.

The meningitis had attacked his body and nearly killed him. He was about

8 years old at the time. When I met him, he was in college, doing things

no one would have ever thought he'd be able to.

I

know this story may sound obscure, but I think of him all the time. He

has such a great attitude and never let his disabilities hold him back. In

fact, he nicknamed himself " Mini " since he's so short without his

prosthetics. He even has a sense of humor about his ailments. Now

that isn't fair. For such a young person to have to deal with so

much. Then I remind myself that Mini is one of many. And as

dramatic as it sounds, I think of poor starving children, homeless people,

people with terminal cancer, AIDS, etc. And I remind myself, I'm not

dying. I might be suffering a bit, but I have options. There are

things that can be done to allow me to live a basically normal life.

That's what keeps me going. I remind myself that there are so many people

out there dealing with things that I couldn't dream of having to deal with.

We

all have a tendency to think of ourselves as invincible. " Nothing

like that will ever happen to me. " Well, things happen to everyone

at some point in their life, and I thank God that the ailment I'm dealing with

is not going to keep me from ever running again, or playing football again, or

doing all the things I like to do. It may keep me down for a little

while, but once I have surgery, or get treatment, in a sense, I can go along my

merry way. Except I won't take such simple things as being able to

swallow for granted ever again.

I

hope this helps. Hang in there, stay strong, weigh out your

options. It seems as though your at a point where you need to take the

next step and have some treatment for the condition. I know its scary, it

is for all of us, but I think you'll be much happier once you take that step.

GOOD

LUCK!

Mike

[Guest guest]

Notan:

You are one deep thinker -- well said.

Peggy

>

[Guest guest]

Hi Tania,

I just felt compelled to write back to you. I am new to this site

and didn't know it existed. As a matter of fact I never knew anyone

else in my life who has this disorder. I have been living with this

for 32 years. Living with the spasms or " my attacks " that I call

them has been the most challenging. I could never talk to anyone

about this because they didn't understand. I would just excuse

myself and deal with it alone. My husband tries to be understanding

and when I have an " attack " he just quites the kids and tells them

not to talk to me now. I have had these attacks about 10-15 times a

week for 32 years and 1 1/2 years ago, I had a dilitation done at the

Cleveland Clinic by Dr. Vaezi. He assured me this would work. I

didn't trust him to begin with, but not only can I swallow better,

but " my attacks " have virtually gone away. I only have had about 15

of them since. That was miraculous for me. I just love Dr. Vaezi

now! The reason I felt I had to write is that I felt like it was the

end of my rope. I thought I was going to choke to death in front of

my children. When I choked one night and had broken blood vessels in

my eyes, that's when I had had enough. That started the ball rolling

to find this doctor in Cleveland. I live in Pittsburgh, PA. I don't

know what procedures you have had already, but do not give up, just

keep looking for answers, or procedures. I would highly recommend

him to anyone and he seemed to sure that what he did to me would

work. He had no doubts. Maybe he would do the same for you.

Depression is something I have also lived with for 15 years maybe

longer the doctors don't know. When I am down, I just tell myself

that " All positions are temporary " ! I know it isn't as simple as

that, but if you really think about it, it's true. Today I might

feel this way, but tomorrow, I will have a better day and so will

you. Keep your head up and enjoy what you can and when you can't,

just take a time out for yourself. Hope this helped a little. Write

back and let me know how you are doing today. Take care.

>

> Hey all...I have been having a really rough time lately.. I

actually

> tried to post yesturday.. I sat here crying like a baby while i was

> writing and than for some strange reason my post didnt post.. I

have

> been getting real depressed.. I had my mom and her husband over for

> dinner the other night.. I slaved over the stove and like always i

> couldnt eat.. I tried and it was so bad i was in the bathroom

> throwing up for about 15 minutes.. I hate cooking.. I hate not

being

> able to enjoy all the things i used to love.. FOOD!!! Now I havent

> been able to keep water down..Its getting scary for me and I feel

so

> alone.. My family doesnt get the whole A thing.. If i could give up

> i would but I have 6 angels that need me and that scares me too..

im

> so scared of something going wrong and leaving them is my biggest

> fear.. I soemtimes find myself just crying like i was a new born

and

> i cant explain to my husband or anyone else what my problem is..

Has

> anyone ever wondered why this has happened to you.. Im there i ask

> myself everyday what did i do to deserve this.. I dont think ill

evr

> know... sorry to go on but I know you all understand the bad days

> and i just need support from people that are in my shoes.. This

> disorder can make a good person very unsure of alot of things and

> thats me right now... Thanks for listening.. your feed back is

> greatly needed and appreciated... teary tania

[Guest guest]

--- Hi,

Pick that towel back up, or get a clean one if you threw up in that

one. Wash your face, fix your hair, brush your teeth. Put on your

makeup.

I am not new to the board, my name is Jo from South Florida. I was

where you were last year until I had my surgery in June. I have two

of my own, a boy, Cody, 9 and a girl Jenna, 6. My husband and my

extended family TRIED to be understanding, but they just didn't get

it. If you are the ROCK of the family as I believe you are, there is

no such thing as giving up, so take that out of your vocabulary.

You are going through this for a reason, but the reason is not yet

clear. I'm not going to be sugarcoating reality and cocooning you

from this situation because it is what it is. You are going through

it. It totally is terrible, but YOU MUST WILL TO SURVIVE IT. I had

emotional support from this group as well as crushable SSRIs (Paxil)

and God's love and Spirit at my LOWEST POINTS. Like when I was

throwing up on the side of the road after swallowing barium for a

study and thinking that I wanted to meet my Maker right there and

then. I forgot that it was not my will, but HIS and I made it. YES,

it can BE DONE.

I respect everyone who is going through this because it is such a

horrible place to be. It is up to you to go forward with treatment;

if not for yourself, for your children. So wipe the tears, stop

feeling sorry for yourself. Find your doctor. Pray, pray, pray. GO

through that tunnel. HOLD OUR HANDS, GO FORWARD.

Jo

Someone who truly cares--post surgical since June 15, 2004. My baby

myotomy is now 8 plus months old!

In achalasia , " mamiof62003 " <mamiof62003@y...> wrote:

>

> Hey all...I have been having a really rough time lately.. I actually

> tried to post yesturday.. I sat here crying like a baby while i was

> writing and than for some strange reason my post didnt post.. I have

> been getting real depressed.. I had my mom and her husband over for

> dinner the other night.. I slaved over the stove and like always i

> couldnt eat.. I tried and it was so bad i was in the bathroom

> throwing up for about 15 minutes.. I hate cooking.. I hate not being

> able to enjoy all the things i used to love.. FOOD!!! Now I havent

> been able to keep water down..Its getting scary for me and I feel so

> alone.. My family doesnt get the whole A thing.. If i could give up

> i would but I have 6 angels that need me and that scares me too.. im

> so scared of something going wrong and leaving them is my biggest

> fear.. I soemtimes find myself just crying like i was a new born and

> i cant explain to my husband or anyone else what my problem is.. Has

> anyone ever wondered why this has happened to you.. Im there i ask

> myself everyday what did i do to deserve this.. I dont think ill evr

> know... sorry to go on but I know you all understand the bad days

> and i just need support from people that are in my shoes.. This

> disorder can make a good person very unsure of alot of things and

> thats me right now... Thanks for listening.. your feed back is

> greatly needed and appreciated... teary tania

[Guest guest]

Short answer ...

He REALLY needs a Functional Behavior Analysis.

- Becky

[Guest guest]

In a message dated 11/30/2006 9:59:10 AM Eastern Standard Time,

Michdock@... writes:

I often look at

the standards for 2nd or 3rd grade work in the area that the HS is working

on and get ideas for Maverick.

You know what is frustrating about this...I am doing allo the work. I

thought the SPED teacher and gen ed teacher were suppose to do the

modicfications!

I just sent a letter today to Micah's SPED teacher about this. He is

expected to do what the regular kindy's are doing PLUS she sends home work that

is

appropriate for him and in his IEP. Last night he had to write the word

said 5 times. Glue the word said in a sentence and write a sentence using the

word said. Then he had to trace the letter M (appropriat) and try to write

it on his own after each tracing, 24 of them. " The first part of his

homework other than cutting and glueing is way over his head. I trace the

letters

to a simple sentence for him to copy. Remember this is a kid who is JUST

learning to use a pencil and can only make certain letters. After struggling

with this for 15 minutes I whip out the 24 letter M's for him to trace and then

try to write on his own and he balks. I don't blame him. He is being asked

to do double the homework load because he has special needs. NOT! I told

teacher (did not ask) that when there is a load of homework like that I am

going to do the SPED appropriate homework first. If micah wants to tackle the

other than i am all for it but I am not going to push it. I spend a half hour

every night working with him on his appropriate work. Memorizing alphabet,

matching big and little letters of the alphabet. His colors, numbers 1-10 and

his sight words as well as his simple reading books. With the addition of

the homework he gets no time to be a kid. Gets home at 4:00, chills til

4;45...eat dinner til 5'45...do homework til 6:15 or 6:30...take a bath til 7:00

and bedtime by 7:20 so we can work on his skills til we have our sing and

story time at 7:45. Bed and asleep by 8:00. This is nuts. He gets all of

about 45 minutes out of the entire day to himself. They are now doing reading

response papers. Each week they have to read a book and answer a question,

ex: What was the problem...what was the solution etc. Obviously Micah can't

tell them as he is still pretty non-verbal. Also some of the questions are way

above his understanding. So what is the answer " Mom can modify so that he

can do it. " I do this for him so he can learn but it is very frustrating. So

we print out pictures of the story and ask him to show us what happened

first and second. sometimes third if the story is simple. This is the 2nd year

in a row that I am doing most of the modifications. Frustrating to say the

least!!!

Loree

[Guest guest]

Barbara,

Do NOT throw in the towel. That is what they want. That is what always

happens and that is why school districts do not have to implement and

support inclusion.

Make them follow the law.

Call an IEP meeting and write down things very specifically. Parents will

be informed of what student is studying in with each unit. Make of a sheet

to use for them to write up goals and objective for each unit in Science (or

get a copy of the one that Kathy made.) Have it very simple and

specific and HAVE THE MODIFICATIONS ON THERE. State also in the IEP that he

is to attend ALL Science classes and remind the science teacher that SHE is

responsible for his science goals and grades.. Make her take ownership.

Request an aide who has the ability to be in class ON TIME or offer to go

take him to class and wait until she gets there. PUT THIS ALL IN WRITING on

the IEP.

Also, ask for monthly inclusion meetings where you can go over what he is

working on in each class,, plan ahead problem solve.. For example.. Get him

AWAY from the kid he has issues with in Computer. They obviously don't

need to sit together. I would also write goals that he will " Socialize with

the typical poplulation during lunch " and get him away from the " SPED " table

Maybe even get him mainstreamed into a few more classes. Social Studies or

some type of geography or history classes are pretty easy to modify and

accomodate. The key is YOU finding out what he is to do before hand and

then getting some ideas on how to bring it to his level. I often look at

the standards for 2nd or 3rd grade work in the area that the HS is working

on and get ideas for Maverick.

Take a tape recorder and tape your meetings. AND THEN if they don't follow

through.. File a complaint with your dept of Ed.. They have to investigate

no matter what and even if they find in the school's favor, they were there

to check it out and the school is on their toes.

I hear what you are saying about homeschooling. I have OFTEN considered it,

but Maverick enjoys school so much and he is getting an education, even tho

it seems like I have to fight for every little thing.

I wish you luck.

" Regardless of how good of a swim instructor you are, you can't teach a

person to swim in the parking lot of a swimming pool. "

Norman Kunc

[Guest guest]

While FBA's can really be helpful, it is important that it is done in the

right spirit. It can also backfire and be used AGAINST the student.

Now, if you ask ME, the school needs an FBA for sure, LOL.

" Regardless of how good of a swim instructor you are, you can't teach a

person to swim in the parking lot of a swimming pool. "

Norman Kunc

[Guest guest]

He needs a lot more than that.

The school isn't holding any reasonably high expectations for him and is in

fact setting him up to fail in science by keeping him away from the

classroom, failing to appropriately differentiate his work, and basically

refusing to step up to the plate and be responsible for his educational

needs.

This is pretty typical MS behavior (the school's) and you will have to push

hard to make any of this work for him. Or you can find an alternative to

public education, which-after all my family's years of supporting it-seems

to me to really be increasingly incompetent and destructive to kids with and

without d/a.

Feeling cynical this am-

Judi

_____

[Guest guest]

Hey guys,

 

I have increased/am increasing the yeast protocol, done the parasite treatments,

adjusted her diet  and my child still poops on her hands and smells it. Is this

now a behavior problem? Will this go away once I start chelating? Any ideas?

[Guest guest]

I personally don't believe everything is associated with yeast and diet and

believe that behavior therapy can help when done correctly. For instance, when

we started gfcf my daughter started pooping on the toilet instead of in her

pants. We started ABA before chelation and one of the things we addressed was my

daughter laying on her back, touching herself and smelling her hand and she

would put her head in my butt (probably TMI). She stopped smelling her hand in 3

to 4 weeks. Every once in awhile, I have to correct her about putting her head

in my butt. (this is way much better than all day!!) (before, I did everything

for SI and yeast for over a year, nothing helped). We took care of this before

chelation.

HTH,

S

[Guest guest]

> I have increased/am increasing the yeast protocol, done the parasite

treatments, adjusted her diet and my child still poops on her hands and smells

it. Is this now a behavior problem? Will this go away once I start chelating?

Any ideas?

Excessive smelling, for one of my kids, was related to yeast. During certain

protocols, I had to significantly increase the yeast protocol. What is the

strongest yeast protocol you have used?

Dana

[Guest guest]

Our son had exasperating poop habits (smearing). It drove us crazy. For us, it

went away with potty training, which happened (at 4+). Is your daughter potty

trained? Also, I wish we had started chelating earlier, for what it's worth.

Maggied.

>

> Hey guys,

>  

> I have increased/am increasing the yeast protocol, done the parasite

treatments, adjusted her diet  and my child still poops on her hands and smells

it. Is this now a behavior problem? Will this go away once I start chelating?

Any ideas?

>

[Guest guest]

Hey heather, my son (4 years old, dx since 16 months) has been doing

the exact same thing. I attributed it to him being curious, but not

now that I read what you said. Can you explain to be what you are

doing so I can get this disgusting practice to dissappear... I am

frustrated and feel like I can't govern this all the time when I'm not

with him and hope he will just stop doing it. Help!!! . Thanks

!!

Hugs and hope to you,

On Nov 18, 2009, at 7:37 AM, " S. " <imyconsulting@...>

wrote:

> I personally don't believe everything is associated with yeast and

> diet and believe that behavior therapy can help when done correctly.

> For instance, when we started gfcf my daughter started pooping on

> the toilet instead of in her pants. We started ABA before chelation

> and one of the things we addressed was my daughter laying on her

> back, touching herself and smelling her hand and she would put her

> head in my butt (probably TMI). She stopped smelling her hand in 3

> to 4 weeks. Every once in awhile, I have to correct her about

> putting her head in my butt. (this is way much better than all

> day!!) (before, I did everything for SI and yeast for over a year,

> nothing helped). We took care of this before chelation.

>

> HTH,

> S

>

>