Food. . . .

[Guest guest]

This is what it's like (for me) to have Achalasia. You go grocery shopping.

You disregard about 90% of what's in the store, 'cause you know it won't stay

down. You pick and choose what at least has a *chance* of doing so. You line

up, check out, bring it home. And immediately throw 90% into the trash can.

Well not really. You fix it, eat it, and THEN throw it away.

You become new best friends with your scales. After fifty years of dieting,

suddenly a lost pound scares the shoot out of you. Two pounds creates panic.

Meanwhile your GI guy doesn't see this as anything urgent. Two months out from

ER experience, during which the diagnosis was made pretty much via the barium

swallow, they *still* can't manage to get you an appointment upline. The only

med they're *willing* to prescribe to open that tiny 5mm opening into your tummy

is something you're very allergic to (all calcium channel blockers); I asked for

nitrates, and the word was: Not enough studies (excuse me, but bull chit!). The

only " treatment " they're offering is another 15mm dilation via endoscope. Which

held for less than a week the first time around.

So yesterday, after waiting the prescribed two weeks for an appt. upline (UVA)

been calling the appointment maker girl, she suggests that since they (Digestive

Health) won't call *her* back, I try calling. Since she didn't have the 800

number for them, I used the one I had for the whole of the UVA system. After

the word " achalasia " I got sent to Dr. , the head of thoracic surgery, and

they made an appointment in five minutes. And are sending for my records.

TODAY, Digestive Health, the ones who haven't called back my GIs, call my kid

and ask me to call so I can make an appt. I do. Line busy. They don't call

back.

What is WRONG with these people? They don't see this as a life threatening

disease? If five days in the cardiac wing don't/won't/didn't convince them,

what exactly would?

[Guest guest]

Everything you are describing is true!  At one point I spent over 12 years with

my faithful GP and she would NOT believe that I thought I had achalasia.  After

trying different meds, of which NONE of them worked, I was told to just chew

slower or eat when I am not so stressed, bla, bla, bla!!!!  Really???  Seems

that no one could conceive that I actually could not swallow the darn food.  I

lived my life constantly starving....taking a bite here and there is not

enough.  It totally upsets me that most all doctors have no compassion nor

understanding of achalasia.  My turning point was when I found this group and

armed with KNOWLEDGE....I told them what tests needed to be done, voila!!!!  I

had a diagnosis very quickly and found a great surgeon. 

 

I think you literally must insist that something is done because you can't

eat!  But also, make sure it's a competent doctor who performs ANY of the

procedure that you decide to do.  I wish you the best and know how it

feels!!!!  

 

Julee ( from Oregon).

From: puddleriver13 <puddleriver13@...>

achalasia

Sent: Tuesday, December 6, 2011 2:52 PM

Subject: Food. . . .

 

This is what it's like (for me) to have Achalasia. You go grocery shopping. You

disregard about 90% of what's in the store, 'cause you know it won't stay down.

You pick and choose what at least has a *chance* of doing so. You line up, check

out, bring it home. And immediately throw 90% into the trash can.

Well not really. You fix it, eat it, and THEN throw it away.

You become new best friends with your scales. After fifty years of dieting,

suddenly a lost pound scares the shoot out of you. Two pounds creates panic.

Meanwhile your GI guy doesn't see this as anything urgent. Two months out from

ER experience, during which the diagnosis was made pretty much via the barium

swallow, they *still* can't manage to get you an appointment upline. The only

med they're *willing* to prescribe to open that tiny 5mm opening into your tummy

is something you're very allergic to (all calcium channel blockers); I asked for

nitrates, and the word was: Not enough studies (excuse me, but bull chit!). The

only " treatment " they're offering is another 15mm dilation via endoscope. Which

held for less than a week the first time around.

So yesterday, after waiting the prescribed two weeks for an appt. upline (UVA)

been calling the appointment maker girl, she suggests that since they (Digestive

Health) won't call *her* back, I try calling. Since she didn't have the 800

number for them, I used the one I had for the whole of the UVA system. After the

word " achalasia " I got sent to Dr. , the head of thoracic surgery, and they

made an appointment in five minutes. And are sending for my records.

TODAY, Digestive Health, the ones who haven't called back my GIs, call my kid

and ask me to call so I can make an appt. I do. Line busy. They don't call back.

What is WRONG with these people? They don't see this as a life threatening

disease? If five days in the cardiac wing don't/won't/didn't convince them, what

exactly would?

[Guest guest]

You know I can totally sympathize with you. I live alone but you look in my

cabinets and fridge/freezer and you's think 5 people live there!! But there are

foods for all levels of dysphagia. And cookies just because sometimes I need to

add calories! Where I work we have a full service cafeteria and I go there

almost everyday for either breakfast ( eggs mostly ) or lunch which is salad or

soup usually. Their salad bar is stocked better than mine.

 

I too waste a lot but am happy when I am able to get a fair amount of food down.

 

And the weight thing, yikes! When I first got sick I was 149 lbs at 5'3, which I

now is a bit heavy. I battled my weight a bit for the past ten years. But then I

got sick this May, and went in for a dilation gone bad and after that dropped 35

pounds and neither hospital I was at was the least bit worried. My last dilation

was almost 5 weeks ago and my weight is up and down now. I still get these

stomach aches almost daily - especially if I don't drink Miralax everyday. I

think I may have kept on 2-3 pounds since the dilation but did have to go

shopping again last nigth for dress slacks for work.

 

I think most doctors would not see it the way we with A do. I had the flu -or so

I think last week and I could visibly see I was loosing weight and I was really

struggling to swallow and I was terrified to think the last dilation only

lasted that long!!!! This week it is better except for my stomach.

 

What is wrong with these [eople is they don't walk in our shoes -they can say

all they want that they understand what we are going through but sorry unless

you are in my shoes, you just don't get it right???

 

 

________________________________

From: puddleriver13 <puddleriver13@...>

achalasia

Sent: Tuesday, December 6, 2011 4:52 PM

Subject: Food. . . .

 

This is what it's like (for me) to have Achalasia. You go grocery shopping. You

disregard about 90% of what's in the store, 'cause you know it won't stay down.

You pick and choose what at least has a *chance* of doing so. You line up, check

out, bring it home. And immediately throw 90% into the trash can.

Well not really. You fix it, eat it, and THEN throw it away.

You become new best friends with your scales. After fifty years of dieting,

suddenly a lost pound scares the shoot out of you. Two pounds creates panic.

Meanwhile your GI guy doesn't see this as anything urgent. Two months out from

ER experience, during which the diagnosis was made pretty much via the barium

swallow, they *still* can't manage to get you an appointment upline. The only

med they're *willing* to prescribe to open that tiny 5mm opening into your tummy

is something you're very allergic to (all calcium channel blockers); I asked for

nitrates, and the word was: Not enough studies (excuse me, but bull chit!). The

only " treatment " they're offering is another 15mm dilation via endoscope. Which

held for less than a week the first time around.

So yesterday, after waiting the prescribed two weeks for an appt. upline (UVA)

been calling the appointment maker girl, she suggests that since they (Digestive

Health) won't call *her* back, I try calling. Since she didn't have the 800

number for them, I used the one I had for the whole of the UVA system. After the

word " achalasia " I got sent to Dr. , the head of thoracic surgery, and they

made an appointment in five minutes. And are sending for my records.

TODAY, Digestive Health, the ones who haven't called back my GIs, call my kid

and ask me to call so I can make an appt. I do. Line busy. They don't call back.

What is WRONG with these people? They don't see this as a life threatening

disease? If five days in the cardiac wing don't/won't/didn't convince them, what

exactly would?

[Guest guest]

You are so right - welcome to my world!!! I too have so much trouble getting

appointments. I end up constantly hassling my doctor who is great but the

administrators who make the appointments just don't seem to get it. I was

referred for an urgent barium swallow two and a half weeks ago. Still no date so

am going to have to hassle again. can't eat much, sick most of the time I try

and just having to persevere to get down as much as I can so I don't go through

paranoid weight loss stuff. I despair of these people!! Hey ho, at least we have

each other here. Much love Kay

>

> This is what it's like (for me) to have Achalasia. You go grocery shopping.

You disregard about 90% of what's in the store, 'cause you know it won't stay

down. You pick and choose what at least has a *chance* of doing so. You line

up, check out, bring it home. And immediately throw 90% into the trash can.

>

> Well not really. You fix it, eat it, and THEN throw it away.

>

> You become new best friends with your scales. After fifty years of dieting,

suddenly a lost pound scares the shoot out of you. Two pounds creates panic.

>

> Meanwhile your GI guy doesn't see this as anything urgent. Two months out

from ER experience, during which the diagnosis was made pretty much via the

barium swallow, they *still* can't manage to get you an appointment upline. The

only med they're *willing* to prescribe to open that tiny 5mm opening into your

tummy is something you're very allergic to (all calcium channel blockers); I

asked for nitrates, and the word was: Not enough studies (excuse me, but bull

chit!). The only " treatment " they're offering is another 15mm dilation via

endoscope. Which held for less than a week the first time around.

>

> So yesterday, after waiting the prescribed two weeks for an appt. upline (UVA)

been calling the appointment maker girl, she suggests that since they (Digestive

Health) won't call *her* back, I try calling. Since she didn't have the 800

number for them, I used the one I had for the whole of the UVA system. After

the word " achalasia " I got sent to Dr. , the head of thoracic surgery, and

they made an appointment in five minutes. And are sending for my records.

>

> TODAY, Digestive Health, the ones who haven't called back my GIs, call my kid

and ask me to call so I can make an appt. I do. Line busy. They don't call

back.

>

> What is WRONG with these people? They don't see this as a life threatening

disease? If five days in the cardiac wing don't/won't/didn't convince them,

what exactly would?

>

[Guest guest]

This is all too true. Interestingly, I'm also on a feline IBD support group, and

just read numerous posts about frustrated cat owners whose vets will not listen

to them. Cats are being misdiagnosed, mistreated, etc. And the poor cats are

suffering because the vets refuse to listen.

Reading these posts it strikes me that this seems to be a pervasive problem

throughout the medical community - regardless of specialty. I used to be a

pediatric nurse, and certainly have stories about physicians not listening to

the moms - at the peril of the child.

I don't know what the answer is, except to keep fighting for what we know is

right and until someone listens to us. I'm afraid this may only get worse with

more demands on docs and lower reimbursements. Makes me wonder if an alliance or

organization can be formed to empower us with more than knowledge, but with a

credible backing of resources that will command some attention when we're

desperately seeking help?  (There's more power in numbers).

I'm thankful that we have this forum - and each other.

Kim

________________________________

From: Kim Abrams <xploring37@...>

" achalasia " <achalasia >

Sent: Wednesday, December 7, 2011 1:17 PM

Subject: Re: Food. . . .

 

You know I can totally sympathize with you. I live alone but you look in my

cabinets and fridge/freezer and you's think 5 people live there!! But there are

foods for all levels of dysphagia. And cookies just because sometimes I need to

add calories! Where I work we have a full service cafeteria and I go there

almost everyday for either breakfast ( eggs mostly ) or lunch which is salad or

soup usually. Their salad bar is stocked better than mine.

 

I too waste a lot but am happy when I am able to get a fair amount of food down.

 

And the weight thing, yikes! When I first got sick I was 149 lbs at 5'3, which I

now is a bit heavy. I battled my weight a bit for the past ten years. But then I

got sick this May, and went in for a dilation gone bad and after that dropped 35

pounds and neither hospital I was at was the least bit worried. My last dilation

was almost 5 weeks ago and my weight is up and down now. I still get these

stomach aches almost daily - especially if I don't drink Miralax everyday. I

think I may have kept on 2-3 pounds since the dilation but did have to go

shopping again last nigth for dress slacks for work.

 

I think most doctors would not see it the way we with A do. I had the flu -or so

I think last week and I could visibly see I was loosing weight and I was really

struggling to swallow and I was terrified to think the last dilation only

lasted that long!!!! This week it is better except for my stomach.

 

What is wrong with these [eople is they don't walk in our shoes -they can say

all they want that they understand what we are going through but sorry unless

you are in my shoes, you just don't get it right???

 

 

________________________________

From: puddleriver13 <puddleriver13@...>

achalasia

Sent: Tuesday, December 6, 2011 4:52 PM

Subject: Food. . . .

 

This is what it's like (for me) to have Achalasia. You go grocery shopping. You

disregard about 90% of what's in the store, 'cause you know it won't stay down.

You pick and choose what at least has a *chance* of doing so. You line up, check

out, bring it home. And immediately throw 90% into the trash can.

Well not really. You fix it, eat it, and THEN throw it away.

You become new best friends with your scales. After fifty years of dieting,

suddenly a lost pound scares the shoot out of you. Two pounds creates panic.

Meanwhile your GI guy doesn't see this as anything urgent. Two months out from

ER experience, during which the diagnosis was made pretty much via the barium

swallow, they *still* can't manage to get you an appointment upline. The only

med they're *willing* to prescribe to open that tiny 5mm opening into your tummy

is something you're very allergic to (all calcium channel blockers); I asked for

nitrates, and the word was: Not enough studies (excuse me, but bull chit!). The

only " treatment " they're offering is another 15mm dilation via endoscope. Which

held for less than a week the first time around.

So yesterday, after waiting the prescribed two weeks for an appt. upline (UVA)

been calling the appointment maker girl, she suggests that since they (Digestive

Health) won't call *her* back, I try calling. Since she didn't have the 800

number for them, I used the one I had for the whole of the UVA system. After the

word " achalasia " I got sent to Dr. , the head of thoracic surgery, and they

made an appointment in five minutes. And are sending for my records.

TODAY, Digestive Health, the ones who haven't called back my GIs, call my kid

and ask me to call so I can make an appt. I do. Line busy. They don't call back.

What is WRONG with these people? They don't see this as a life threatening

disease? If five days in the cardiac wing don't/won't/didn't convince them, what

exactly would?