Re: Update after HM and dilation number 1!

[Guest guest]

I am so sorry.

Hugs from Canada!

Jenn

Sent from my iPhone

On Mar 18, 2012, at 22:08, " lindsayaus " <lindsay_kite@...> wrote:

> HM in Nov 2011 - fail

> 1st dilation Feb 28 2012 - fail

>

> I sit here crying into my laptop because I have had enough!

> I know some of you say it will get better, but it isn't.

> I am getting sick of waiting for the next appointment and the next stage in

the hope I will get improvement.

> No more to say really, other than today I sit here distraught!

>

>

>

>

[Guest guest]

Hi

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

for you :-).

[Guest guest]

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]

Hi ,

 

Based upon your previous posts I think you should try calling a family meeting

and quietly tell all the members of your family your feelings and your need of

their support and understanding. Without understanding your condition and

feelings, you know how isolating this can be. You need your family's support;

that's what families do. They help each other in their greatest moments of need.

Please don't give in to this. You have too much to live for.

 

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Sunday, March 18, 2012 11:03 PM

Subject: 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]

I am so sorry to hear this. Please keep the faith...we're all praying

for you.

Kim

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Sunday, March 18, 2012 9:08 PM

Subject: Update after HM and dilation number 1!

 

HM in Nov 2011 - fail

1st dilation Feb 28 2012 - fail

I sit here crying into my laptop because I have had enough!

I know some of you say it will get better, but it isn't.

I am getting sick of waiting for the next appointment and the next stage in the

hope I will get improvement.

No more to say really, other than today I sit here distraught!

[Guest guest]

Nobody truly understands how I am feeling except you guys here. My husband

understands most of it, but still sometimes doesn't get it!

I have to explain to my in-laws over and over again. I don't think they will

ever understand.

> >

> > Hi

> >

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

day for you :-).

> >

> >

> >

>

>

>

>

>

[Guest guest]

I know what you mean . I waste hours trying to eat and still the scales

tell me a different story. Hope is a good thing though and I pray for all of us

now, not just me. Heading out for porridge and latte before work. Keep your chin

up and don't cry into your laptop, water damage may affect your warranty!

Stu McCormick

On 19 Mar 2012, at 02:25, Taljaard <wendy.taljaard@...> wrote:

> Hi

>

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

day for you :-).

>

>

>

>

[Guest guest]

Good point Stu...my laptop in only a few months old and would still be under

warranty. I can still drink my lattes too!

My birthday outing next month will probably be just for coffee. The worst part

about that is that it's my hubby's birthday the same day. We always used to go

out for dinner because we were celebrating both birthdays. This year will be a

very different story though!

>

> > Hi

> >

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

day for you :-).

> >

> >

> >

> >

>

>

>

[Guest guest]

Hi ,

 

If you can't celebrate your birthday and your hubbies together by going out on

your traditional dinner together, then it is time to begin a new tradition.

Please don't dwell on what you can't do, but focus on what you can do. There are

many ways the two of you can have a good time with your dual celebration.

 

In the meantime, let's see if this last dilataton helped you at all, and what

decisions you may need to make.

 

 

PS: Here is perhaps a silly imaginary analogy that is not too well thought out.

When professional athletes can no longer compete at a high level, they retire

from competition. If they are smart or savvy enough they find other important

things to do with their lives (especially since they are still relatively

young).  Now here comes the silly part. For purposes of your upcoming birthday,

think of yourself as a previous professional eater, who no longer can compete at

a professional level. While you can no longer eat at a high level (or for some

run a 4 minute mile), you find other ways to celebrate what is important for

you.

 

, I'm trying.

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Monday, March 19, 2012 5:51 AM

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

 

Good point Stu...my laptop in only a few months old and would still be under

warranty. I can still drink my lattes too!

My birthday outing next month will probably be just for coffee. The worst part

about that is that it's my hubby's birthday the same day. We always used to go

out for dinner because we were celebrating both birthdays. This year will be a

very different story though!

>

> > Hi

> >

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

day for you :-).

> >

> >

> >

> >

>

>

>

[Guest guest]

, I think I am pretty much back to pre dilation and pre HM with my

eating. Mainly liquids and mush. Back on soup for dinner.

Sadly, the world revolves around food and socializing revolves around food 99%

of the time....there is no getting around that!

So 4 months on from HM, I am no better off but my purse is lighter!

Still just playing the waiting game.

I think when I see my doc next week, he is going to suggest surgery again to

make the cut longer. What ever he says, it will mean more waiting.

> >

> > > Hi

> > >

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

better day for you :-).

> > >

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

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]

Hello ,

Sounds like a good family atmosphere.

My experience was my parents learned to expect me to need a lot of fluids to

force food down and time to finish meals. (often, when you go to restaurants,

achalasia isn't always apparant to waiters/waitresses).

Another thing I admired was my parents' openly caring about every step of

treatment process - accompanying me to all the procedures and surgeries, and

always appreciating my perspective. It isn't always clear to practitoners when

these procedures fail, nor do they often like to admit it. After they did

repeatedly fail, my parents embraced the concept of pain management as necessary

and acknowledged it improved my eating, pain and live functions.

Friends can alo help, but many don't undertstand. I remember in my teens

literally gagging, filled up with food/fluids, being unable to breathe -

regurgitating, and friends thought it was a prank. Or having pain and spasms and

being dismissed.

No one likes to talk about medical disorders as usual topics of conversation to

family or friends. That's why groups like this are resourceful for us with

achalaisia.

Steve

> >

> > Hi

> >

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

> better day for you :-).

> >

> >

> >

>

>

>

>

>

[Guest guest]

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]

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]

Several years before my nissen fundoplication, I used to tell jokes while

suffering through one acid reflux attack after another.  That way it didn't

scare my kids & it actually helped me get through them, especially when I had

about 7 in a row.  I eventually got to the point where I couldn't joke

anymore.  That's why I ended up having the nissen & also hiatal hernia

surgery.  Now I'm plagued with esophageal spasms that I can't get under

control.  Like they say, when it rains it pours!

 

________________________________

From: " ravenstorm2008@... " <ravenstorm2008@...>

Achalasia Group <achalasia >

Sent: Monday, March 19, 2012 6:54 PM

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

 

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]

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]

that is too bizarre!

Sent from my iPhone

[Guest guest]

Ah , I'm so sorry to hear you feel so down, it is awfully soul destroying

some times!! Fingers crossed you notice small improvements gradually.

I'm in a similar situation, I've had an emergency HM and 4 dilatations since

Oct, but slowly, sliwly. I have also accepted the fact that I will never be

able to eat without thinking about it....fingers crossed for you xx

>

> HM in Nov 2011 - fail

> 1st dilation Feb 28 2012 - fail

>

> I sit here crying into my laptop because I have had enough!

> I know some of you say it will get better, but it isn't.

> I am getting sick of waiting for the next appointment and the next stage in

the hope I will get improvement.

> No more to say really, other than today I sit here distraught!

>

>

>

[Guest guest]

Hello lindsay,

Your message is getting through loud and clear.

It is awful. Most GIs will push you through these hoops, thinking what works for

most will work for all. The worst is few validate our perspective.

After the HM and dilations, I clearly told my doctors swallowing - rather,

forcing food down - was not improved; and later read remarks about " successes "

in their procedures. Or have some GI office say, " We don't do [treatment that

works] " after all the ---- -ups.

So - I understand the emotion well. You aren't alone.

Steve

>

> HM in Nov 2011 - fail

> 1st dilation Feb 28 2012 - fail

>

> I sit here crying into my laptop because I have had enough!

> I know some of you say it will get better, but it isn't.

> I am getting sick of waiting for the next appointment and the next stage in

the hope I will get improvement.

> No more to say really, other than today I sit here distraught!

>

>

>

[Guest guest]

When my spasms are bad, I can't do a whole lot of anything.  If I can get home,

I usually lay on my heating pad on the couch.  That seems to be the only thing

that will help me, but it doesn't always work or work completely.  There are

times where I go 8-10 hrs where the pain doesn't completely go away.  That's

when I want to cry, but my body is too tired. 

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Tuesday, March 20, 2012 5:54 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]

,

 

While socializing does revolve a lot around food you need to find things you are

able to eat. The main staples of my diet are cream of wheat, mashed potatoes,

yogurt, cottage cheese, butternut squash soup, salad cut up real small and

different soups . I buy a lot of organic soups that are thin and eat with

buttered saltines that I smash up in my soup. I don't eat a lot of solid food

but what I do eat has to have a gravy or liquid in it to help get it down. I

used to love hot and spicy but cannot eat that anymore, nor can I eat pizza. It

really sucks but you learn to accept the hand you were dealt and eat what you

are able to. My vitamins are all liquid or chewables, along with Tylenol

chewable for kids when I need it. Not exactly how I saw my life either but not

all soft food is horrible. I do have to use my food processor for meat but you

got to get creative. If you don't you are going to be miserable all the time by

not being able to accept what you

can't have. I have days when I can't eat hardly anything but have to remind

myself a lot that it could be a lot worse.

 

I may not order a meal when I go out but I do order things that I can try and

eat. Most restaurants have soup and sides that be be easier to eat. I can eat

cheese ravioli, not a lot but enough to fill me up and I take the rest home.

Or ice cream. I can also do certain types of fish, not fried or over cooked and

no pepper but you have to make an attempt. You may a full life ahead of you and

have to try different things for your own sanity. You are focusing too much on

the negative and like has said in another email you need to refocus on

the positive. So it takes you longer to eat less than everyone else! Big deal.

Your friends and family will understand. I have had to take many meals home

without touching much and I try again later.

 

My only brother ( or sibling for that matter )died at 42 from heart disease two

years ago, mainly from being overweight and here I am at 42 struggling to keep

the weight on. I am grateful I can find enough things to eat that can sustain me

and that I have a lot to live and be healthy for. Honestly I didn't start going

out agian until about two months ago. I dwelled too much on not being able to

eat normally like everyone else but also that I cannot drink alcoholic beverages

much either. Now I focus more of my energy on being positive and acceptance of

It is what it is. It make sme sad to read your posts becuase I can tell you are

struggling with this.

 

There are cookbooks out there for those of us with dysphagia. I am sure if you

tried different things you can find things you like!!

 

Kim A

Wi

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Monday, March 19, 2012 4:28 PM

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

 

, I think I am pretty much back to pre dilation and pre HM with my

eating. Mainly liquids and mush. Back on soup for dinner.

Sadly, the world revolves around food and socializing revolves around food 99%

of the time....there is no getting around that!

So 4 months on from HM, I am no better off but my purse is lighter!

Still just playing the waiting game.

I think when I see my doc next week, he is going to suggest surgery again to

make the cut longer. What ever he says, it will mean more waiting.

> >

> > > Hi

> > >

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

better day for you :-).

> > >

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

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]

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]

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 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 :-).

> > >

> > >

> > >

> >

> >

> >

> >

> >