Re: Update after HM and dilation number 1!

[Guest guest]

Yep. I'm there too. What is she gonna order now? And will she eat it? Worse yet,

how many times will she excuse herself from the table? And the worst question is

being asked what you do when you go into the rest room! I just tell them I have

to " breathe " ....

Kim

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Thursday, March 22, 2012 11:25 PM

Subject: Re: Update after HM and dilation number 1!

 

I feel like every time I eat, I am being watched to see if I can eat!

> > >

> > > Hi

> > >

> > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > better day for you :-).

> > >

> > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

I feel that way too. Hate it! My family is pretty used to it and my 10 year old

can mimic my " stuck and trying to swallow " faces. The worst is eating with

people who know about it and having them stealing glances b/c they don't get it.

I must give some pretty telling looks b/c only my mom comments on it. I scare

the others off from commenting. My don't even look lol!

> > > >

> > > > Hi

> > > >

> > > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > > better day for you :-).

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

,

 

I saw your original post on the " fortune teller, " but after re-visiting it with

Kim's post, I would suggest you to tell your mum to demand a refund and apology

from the fortune teller. It is very sad indeed that she deprived herself the joy

that your children could have brought into her lives, not to mention the impact

it has probably had on their lives.  Tell your mum that the reality is that you

have three wonderful children and she is ruining her own life based upon a two

bit misfortune teller who is probably smart enough to know not to follow her own

advice, so why should anyone else.

 

________________________________

From: Kim Abrams <xploring37@...>

" achalasia " <achalasia >

Sent: Thursday, March 22, 2012 10:26 PM

Subject: Re: Re: Update after HM and dilation number 1!

 

That is so sad !! But you have 4 reasons to keep pressing on. It is her

loss!

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Monday, March 19, 2012 8:11 PM

Subject: Re: Update after HM and dilation number 1!

 

Sounds like you have a very supportive family , you are so lucky!

I wish my Dad was around right now. He would do anything for me. Then there's my

Mum....who lives 5 minutes away and I haven't spoken to her for 15 years. The

reason....she got told by a fortune teller that she was going to have 5

grandchildren. My brothers had 2 each which left me with only having 1! I had 3!

So in her eyes my 2nd and 3rd sons shouldn't be here. Is that crazy or what?

This caused much stress while carrying her 6th grandchild and sent my normally

low blood pressure skyrocketing. When I got pregnant with her 7th grandchild she

stopped speaking to me. Consequently, she doesn't know 3 of her 7 grandchildren!

> >

> > Hi

> >

> > Sorry to hear you are having such a tough time. I hope tomorrow is a

> better day for you :-).

> >

> >

> >

>

>

>

>

>

[Guest guest]

,

 

If that's the way you feel (about people watching how you eat), you should go to

a " meet-up " of achalasians in a restaurant. Everyone wants to see how everyone

else is eating, who drinks the most liquid, and giving the " turtle " award for

the slowest eater!

 

 

PS: I made most of that up, with an element of truth to it. I have had meals

" one on one " with 3 other achalasians, and I admit to watching how they ate

compared to me and how much they drank. In all 3 cases we ate in a buffet where

we ate and drank at our own pace and had a great time.  While it was not

exactly like " misery loves company " there was a great comraderie between us.  I

do know that in California there have been a number of " meet-ups " that were

enjoyed by all.

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Thursday, March 22, 2012 11:25 PM

Subject: Re: Update after HM and dilation number 1!

 

I feel like every time I eat, I am being watched to see if I can eat!

> > >

> > > Hi

> > >

> > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > better day for you :-).

> > >

> > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

I actually saw my Mother last week at my SIL's mothers funeral. She made a

point of always being as far away from me as possible. At one point I was about

to go speak with her but then she got up and left. Not sure what I would have

said anyway!

Can't choose your family!

> > >

> > > Hi

> > >

> > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > better day for you :-).

> > >

> > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

I would love to do that! It would be great to meet with others in Adelaide.

Anyone in Adelaide who reads this and wants to meet....bring it on!

The only problem now is that I am starting to struggle even with liquids!

> > > >

> > > > Hi

> > > >

> > > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > > better day for you :-).

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I yawm all the time but that is mostly due to fatigue!!!!

 

Kim A

Wi

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Tuesday, March 20, 2012 4:54 AM

Subject: Re: Update after HM and dilation number 1!

 

When I get spasms I can hardly breath, then I seem to yawn a lot! Anyone else do

that?

> >

> > Hi

> >

> > Sorry to hear you are having such a tough time. I hope tomorrow is a

> better day for you :-).

> >

> >

> >

>

>

>

>

>

[Guest guest]

Now may be the time to approach your mom and try to have a relationship.

After 15 years she may have regrets but is too proud to take the first step.

This may help you develop a more positive attitude by showing you are the

bigger person. It may relieve a lot of stress you are feeling. If she still

doesn't accept your children then just tell her, you have to think about

yourself and your kids. Her feelings won't haunt you anymore because you are

free. Then you can focus on yourself and count yourself lucky to have a

husband and children who love you. Remember we are always here for you.

S

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Monday, March 19, 2012 8:11 PM

Subject: Re: Update after HM and dilation number 1!

Sounds like you have a very supportive family , you are so lucky!

I wish my Dad was around right now. He would do anything for me. Then

there's my Mum....who lives 5 minutes away and I haven't spoken to her for

15 years. The reason....she got told by a fortune teller that she was going

to have 5 grandchildren. My brothers had 2 each which left me with only

having 1! I had 3! So in her eyes my 2nd and 3rd sons shouldn't be here.

Is that crazy or what? This caused much stress while carrying her 6th

grandchild and sent my normally low blood pressure skyrocketing. When I got

pregnant with her 7th grandchild she stopped speaking to me. Consequently,

she doesn't know 3 of her 7 grandchildren!

> >

> > Hi

> >

> > Sorry to hear you are having such a tough time. I hope tomorrow is a

> better day for you :-).

> >

> >

> >

>

>

>

>

>

[Guest guest]

I don't really think she wants to have a relationship.

She didn't get along with her own Mum, brother, sister, husband (my Dad) and one

of her sons too! There's a pattern there for sure.

I have wondered whether now is the time to do something, but I don't know if I

can actually do it and not raise my stress level.

> > >

> > > Hi

> > >

> > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > better day for you :-).

> > >

> > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

We're having a similar problem with my grandmother. For some reason she had

turned on my mother. My cousin has returned to Maine and she is causing

nothing but problems. She is actually dating my ex-brother-in-law. When my

cousin died she ostracized my mom and one of my aunts at the funeral. My

cousin is jealous of my sister which is why she is dating my

ex-brother-in-law. Then she lies about it to my grandmother. I have heard

that she is engaged to him now. My sister has two daughters. One won't speak

to her and her ex allows her to disrespect my sister.

In the beginning your stress level may go up but don't allow yourself to get

caught up in a bunch of drama. If she refuses to act like an adult then just

tell her how sorry you are that she is going to miss out on the best thing

in life, her family. Then maybe you can move on. Hopefully she will see the

light and realize how foolish she has been.

S

-- Re: Update after HM and dilation number 1!

I don't really think she wants to have a relationship.

She didn't get along with her own Mum, brother, sister, husband (my Dad) and

one of her sons too! There's a pattern there for sure.

I have wondered whether now is the time to do something, but I don't know if

I can actually do it and not raise my stress level.

> > >

> > > Hi

> > >

> > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > better day for you :-).

> > >

> > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

Family can drive you crazy sometimes can't they?

The funny thing is that my stress level went down shortly after I stopped seeing

her!

Now I am worried that I will get tons of horrible spasms if I go see her...and

she really won't care or show any support anyway. That's why I think I wont see

her.

> > > >

> > > > Hi

> > > >

> > > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > > better day for you :-).

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Anyone who has achalasia know's how super difficult it is to " eat a meal " with

others around!  I had a close friend who knew my problem (although they can't

fully relate to it) one day she said " it's just painful to watch you eat " .  If

they only knew!!!!  I loved going out, but I hated trying to eat!  Most of the

time if I was planning a dinner out, I would try and feed myself something at

home so that I would not be completely starving and risk vomiting something

up!!!  Everything in my life at that time revolved around trying to eat and I

was always starving! 

 

Julee (Now from Oregon) 

________________________________

From: Kim Abrams <xploring37@...>

" achalasia " <achalasia >

Sent: Thursday, March 22, 2012 7:29 PM

Subject: Re: Re: Update after HM and dilation number 1!

 

I can relate as well. I am sure my friends and family get a little unnerved by

my strange eating habits but some do make jokes about it, not in a mean way but

what else can you say???

________________________________

From: Stuart McCormick <stuart@...>

" achalasia " <achalasia >

Sent: Tuesday, March 20, 2012 1:07 AM

Subject: Re: Re: Update after HM and dilation number 1!

 

That is is the same for me. I sat with my dad and brother at lunch the other

day. I was breaking a roll up into tiny pieces in my soup for about 10 minutes.

I realised my dad was looking at me with a look which said " this will be me one

day " and we all just started laughing at how ridiculous it was.

I am off to hospital this morning for a blood test because my dehydration levels

are bad and will probably be kept in for a top up. I even see that as a chance

to catch up with the newspapers. Every cloud. Tbh I even giggle when I read how

sad or depressed some people sound on the emails. Don't take this the wrong way

please, I genuinely feel for you all and do want to cry sometimes, but if I

didn't laugh I would probably do myself some serious harm.

Stu

On 19 Mar 2012, at 22:54, " ravenstorm2008@... " <ravenstorm2008@...>

wrote:

> This may sound bizarre to some but my family treats my A with humor. When I

> can't keep things down they crack jokes. This isn't meant to be insulting or

> anything. It actually helps me to not fall into a depression. My family

> supports me 100% and they would never do anything to make me feel bad. I

> have told people if I didn't laugh about it I would curl up in a ball and

> cry my eyes out. Your family may do more than any doctor to help you feel

> better by tending to the emotional part of your health. Stress is bad for us

> with A. I know that food doesn't go down as easily when I am stressed. My

> family doesn't take life to seriously as we know that life is short. We are

> here for you. Think of us as your extended family.

>

> S

>

>

>

>

> -- Re: Update after HM and dilation number 1!

>

>

>

>

>

> Thanks and Jenn...some days really get to me and I need a big cry!

> Tomorrow can only be better, even if only a little bit.

>

>

>

>

> >

> > Hi

> >

> > Sorry to hear you are having such a tough time. I hope tomorrow is a

> better day for you :-).

> >

> >

> >

>

>

>

>

>

[Guest guest]

That's why when I go out now I will only be having coffee.

Although at moment, I am back to almost only liquids again anyway! Can't even

eat very soft veggies or pasta now. Hope my doc can do something quickly for

me. I can feel my E closing more and more each day by how I am able to eat. I

used to eat a little tub of yogurt by eating half then taking a short break

before finishing it. Today it took about an hour! At this point it seems

harder to eat anything than before my HM 4 1/2 months ago!

I need something done now and still have to wait another 3 days to see my doc.

> > >

> > > Hi

> > >

> > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > better day for you :-).

> > >

> > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

Maybe you need a repeat dilatation. And keep repeating it as it may very well

work in the end or you may end up having the HM repeated or go on to the

oesophagectomy.

from the UK

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Saturday, March 24, 2012 8:22 AM

Subject: Re: Update after HM and dilation number 1!

 

That's why when I go out now I will only be having coffee.

Although at moment, I am back to almost only liquids again anyway! Can't even

eat very soft veggies or pasta now. Hope my doc can do something quickly for

me. I can feel my E closing more and more each day by how I am able to eat. I

used to eat a little tub of yogurt by eating half then taking a short break

before finishing it. Today it took about an hour! At this point it seems

harder to eat anything than before my HM 4 1/2 months ago!

I need something done now and still have to wait another 3 days to see my doc.

> > >

> > > Hi

> > >

> > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > better day for you :-).

> > >

> > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

My surgeon has already seen from the barium swallow that he didn't cut long

enough. He wanted to try a dilation first before rushing back to surgery.

> > > >

> > > > Hi

> > > >

> > > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > > better day for you :-).

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Honestly , I feel that way too at times but I also think that for me

personally, it is a little psychosomatic. I know going into it I will have some

trouble and I think that makes me nervous enough that it sresses me out. And

when I am stressed out I really have trouble swallowing. Sometimes or more often

than not I eat at home before I go out and maybe pick on something and tell

everyone I had a big lunch and just aren't that hungry. Or I eat cake!!  LOL -

this is one of my simple pleasures as I don't count calories anymore. Or I might

have a cocktail like 7up with Malibu with a splash of grenadine and I just sip

on it! If I know I am going somewhere for dinner usually I go online to see what

they have on their menu that might appeal to me that day. For me, nmore often

than not it is a taste texture thing. Sometimes I am able to eat home freis with

lots of cheese sauce. Just be a little open minded and see what you can eat in

moderation. I

was very stressed about this in the beginning and I still am sometimes but my

friends and family are jealous that I can eat high fat/calorie foods and they

have to watch it!!

Keep smiling. As the good lord says " this too shall pass " . At some point you

will find a treatment option that you can live with!

Kim A

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Thursday, March 22, 2012 9:25 PM

Subject: Re: Update after HM and dilation number 1!

 

I feel like every time I eat, I am being watched to see if I can eat!

> > >

> > > Hi

> > >

> > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > better day for you :-).

> > >

> > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

I can definitely relate to that!! There are more people that don't understand it

then do. I love it when people tell me how great I look, never mind that I eat

geriatric food, if I am lucky ,  to stay healthy and alive but then they say at

least you look great!!! Yep, I do but wish I could eat like they do!!

I am a grazer as well, and very rarely eat enough in one sitting to get full.

And if I do the food sits in my stomach and takes it's sweet ime to digest.

Drives me nuts!

You can't eat any sweets??

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Thursday, March 22, 2012 9:23 PM

Subject: Re: Update after HM and dilation number 1!

 

I think one of my biggest problems is friends who think this is a temporary

problem that will get fixed eventually. I can't get through to them that this

is my life!

I have always been one who grazes on food all day and hated big meals, but now I

am never ever hungry. I only eat little bits because I know I need to. The joy

of eating has now gone! It was one of life's simple luxuries.

No amount of talking will allow me to enjoy a little late snack or drink in the

evening, because I know I will have to stay up for at least 2 or 3 hours after

it.

When I go out to my boys soccer games I need to pack my supplies like I used to

when they were babies. We used to stop after games at a bakery to get a pie or

pasty or donut or something....now I take my yogurt. I love my yogurt, but when

I am out and about I would love to have what the rest of the family are having.

I am getting sick of explaining to others why I can't eat.

Because I eat such small amounts, even a soup out would be too much.

And finding one without pepper already added or other spices and ingredients

that I can't have will be almost impossible. So while everyone else eats lunch

or dinner, I will sit there and have my coffee! Such is life!

> > >

> > > > Hi

> > > >

> > > > Sorry to hear you are having such a tough time. I hope tomorrow is a

better day for you :-).

> > > >

> > > >

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

I can eat chocolate...it's my one food joy at the moment. It melts and slides

down so I am eating a little more than I normally used to!

> > > >

> > > > > Hi

> > > > >

> > > > > Sorry to hear you are having such a tough time. I hope tomorrow is a

better day for you :-).

> > > > >

> > > > >

> > > > >

> > > > >

> > > >

> > > >

> > > >

[Guest guest]

I can eat chocolate, and eat and eat and eat.  So, I don't eat chocolate.   

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Saturday, March 24, 2012 5:16 PM

Subject: Re: Update after HM and dilation number 1!

 

I can eat chocolate...it's my one food joy at the moment. It melts and slides

down so I am eating a little more than I normally used to!

> > > >

> > > > > Hi

> > > > >

> > > > > Sorry to hear you are having such a tough time. I hope tomorrow is a

better day for you :-).

> > > > >

> > > > >

> > > > >

> > > > >

> > > >

> > > >

> > > >

[Guest guest]

I just hope that things get better for you. At least you have us. We will

always be here for you no matter what.

S

-- Re: Update after HM and dilation number 1!

Family can drive you crazy sometimes can't they?

The funny thing is that my stress level went down shortly after I stopped

seeing her!

Now I am worried that I will get tons of horrible spasms if I go see her..

and she really won't care or show any support anyway. That's why I think I

wont see her.

> > > >

> > > > Hi

> > > >

> > > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > > better day for you :-).

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

But wouldn't another dilatation just cause more scar tissue and make it more

difficult to correct the HM?   

I saw my surgeon last week and he mentioned dilatations and botox as older

modalities that create scar tissue making it riskier for the HM.  Just a

thought...

Kim

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Saturday, March 24, 2012 5:13 AM

Subject: Re: Update after HM and dilation number 1!

 

My surgeon has already seen from the barium swallow that he didn't cut long

enough. He wanted to try a dilation first before rushing back to surgery.

> > > >

> > > > Hi

> > > >

> > > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > > better day for you :-).

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Leda wrote:

>

> But wouldn't another dilatation just cause more scar tissue and make

> it more difficult to correct the HM?

> I saw my surgeon last week and he mentioned dilatations and botox as

> older modalities that create scar tissue making it riskier for the HM.

> Just a thought...

>

In her case she has already had the HM so the next surgery would be a

redo HM, which is mostly an extension of the original HM. There is going

to be scar tissue from the previous HM. I don't think the scar tissue

from the dilatation is going to be much more of a problem at this point.

Also, of the different treatments Botox is the newest. The first

publication of using Botox for achalasia was in 1993. The first HM was

first performed by Ernest Heller in 1913. The first recorded dilatation

was done by Sir Willis in 1672 using a whale bone.

notan

[Guest guest]

wrote:

>

> ...I would suggest you to tell your mum to demand a refund and apology

> from the fortune teller.

>

I find trying to reason with unreasonable people typically just makes

them angry. Let sleeping dogs lie, especially if they have rabies.

notan

[Guest guest]

That would be a great idea if you find others that live in the area. I would

like to meet someone in the Milwaukee, Wi area if there is anyone out there!

 

Kim A

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Friday, March 23, 2012 6:47 AM

Subject: Re: Update after HM and dilation number 1!

 

I would love to do that! It would be great to meet with others in Adelaide.

Anyone in Adelaide who reads this and wants to meet....bring it on!

The only problem now is that I am starting to struggle even with liquids!

> > > >

> > > > Hi

> > > >

> > > > Sorry to hear you are having such a tough time. I hope tomorrow is a

> > > better day for you :-).

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Well said Notan!

> >

> > ...I would suggest you to tell your mum to demand a refund and apology

> > from the fortune teller.

> >

>

> I find trying to reason with unreasonable people typically just makes

> them angry. Let sleeping dogs lie, especially if they have rabies.

>

> notan

>

>

>

>