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[Guest guest]

In a message dated 2/17/00 10:37:53 AM Mountain Standard Time,

wb4@... writes:

<<

Where do you live? Is Leigh accessing cbt?

I cant stress enough how important it is to take care of yourself.

>>

Thanks ,

I live in Colorado and yes we are accessing cbt... We are hooked into local

TS support, I am trying to expand support into the other areas such as OCD..

BTW I am a displaced former-Canadian from Edmonton, Alberta, my grandparents

were friends with Wayne Gretzky's parents...

Jay W.

[Guest guest]

Dear ,

How awful to get this so young ! - here's a big bear hug for all you've

endured so far! The literature tells us that it commonly presents between

the ages of 20 and 40, and if you have the op young the success rate is

higher. Heller myotomies have been around for years but they've only begun

doing the op laparoscopically in the last 6 years or so. It greatly

minimises the scars and major - ness of the surgery, and is becoming

increasingly popular as atreatment for achalasia. But I would caution -

have you discussed other treatment options with your parents and

specialists?? It sounds as though your history of the condition is quite

short - I wouldn't rush into anything, since all achalasia treatments,

including surgery, are not cures - only treatments for the symptoms.

The op takes about two hours, and wipes you out for about a week or so - you

need peace and quiet and rest because that's how long it takes to recover

from a general anaesthetic, and for the clips or stitches to come out. I

went home the day after surgery and basically didn't do much for several

days. I recall being pretty sore for a few days in the chest area and left

shoulder, and having a belting headache that lasted for about a week- a

result of the gas they pump into the operation spaces to give them more room

to manouvre. (There are others in the egroup who have recently had this

procedure - check with them as well - it's probably a bit different for

everyone.)

Laparoscopic surgery involves fine televised remotely controlled instruments

that are threaded into your body at different points. The surgeons have to

be very precise and careful, and experienced in this type of surgery to

minimise damage to surrounding tissue. For the Heller myotomy procedure you

will have, typically, 5 small incisions made on your upper and lower

abdomen. These look awful to begin with while they heal - but within a year

you may be contemplating wearing a bikini again - they shrink and fade to

almost nothing. (I can hardly find mine now).

As to taking a week off school - yes you'll need this and will have to be

careful eating for a while after that - soft food and lots of small snacks

rather than big meals is the way to go. If you are worried about taking

time off school, how about waiting to the school holidays for the op - maybe

having a dilatation done meantime, if the achalasia symptoms are unbearable?

For someone so young though, I rather think the op may be the best way to go

long term. It means you can pretty well forget about the problem and get on

with your life! But don't be rushed into anything - it's your body and your

life.

Good luck, and I'll watch out for your progress reports...

Kind regards, Jeanne.

[Guest guest]

Good luck : I'm much older than you and the operation didn't take

that long to recover from. I had to take it easy for two weeks afterwards

and you get pain meds in the hospital. For me, the thought of such an

operation was scarier than it actually turned out to be. Don't worry about

taking off a week from school!!!! I'm sure you're a good student and all your

teachers can't penalize you for surgery!!!! Hang in there!!!! Sincerely,

Elena

[Guest guest]

You are definitely not alone - Showering (washing, shaving, shampooing, conditioning, rinsing) and the after-showering chores (drying hair, lotioning body, dressing) take SO much time and is such a huge effort for me that it's become an ordeal rather than a pleasure. And I don't have the energy to even try putting on a little make-up after all this. How very sad.

~~

[Guest guest]

,

I feel very much as you do. It is a HUGE effort to take a shower,

wash my hair and shave my legs. Sometimes my husband has to help me

dry off the lower half of my body because I am so exhausted and

stiff. I drove to the store yesterday and bought fish for dinner.

One thing. It was a really big deal. You are NOT alone in this.

The only times I feel good too are when I have slept well and I

haven't done anything except sit. Sad isn't it.

Txbluebelle

-- In , " valerie_delaney "

<rjdelaney8@c...> wrote:

>

> My flatback has changed my life 100%! I was never one to ever,

ever

> be " full of energy " , yet I can say that my first signs that

> something was wrong, was when everything started becoming an

effort.

> Then, I started with the backaches. Of course, like all of you, I

> kept brushing all of the signs under the rug - in deep denial that

> anything could be wrong. I mean, weren't we all assured, that after

> our origional surgeries, we were " cured " and all set for life now?

> Ha! Ha! Now that I have been officially and professionally

diagnosed

> (only after I diagnosed myself after reading Mina's info

> online, like so many others!) has reality set in and I now feel

like

> I am s-l-o-w-l-y falling apart. The only times that I feel okay, is

> when I don't do much at all. When I just sit around and become a

> couch potato for the day, I feel fine. Yet, a little housework, a

> little vacumning or a simple grocery shopping trip is enough to set

> me off most of the time. I am almost embarassed to admit this, but

> as of late, on most days, I find I dread even getting into the

> shower and getting dressed for the day. It seems like I just don't

> have the energy or something. And it actually is work. I mean, you

> have to shave, wash and condition your hair, then get out and

> actually blow dry your hair - and I have very thick hair and it

> takes forever and it seems like I can't keep my arms up that long

> anymore between drying and styling. Then, there is makeup and

> getting dressed. I'm exhausted by the time I finish. I am the only

> one who feels like this? Also, now that I have been diagnosed with

> pseudo-gout in both of my knees, I have that to deal with and my

> chronic neck problems - argh!!!! Yikes, I think I am complaining -

I

> truly try not to do that and put everything into perspective. There

> are people out there , flatback or not, that are much worse off. It

> just seems that lately I have to get out of my dark hole, stop

> feeling bad for myself and concentrate on the postives! Let's hope

> for a good day for all of us!

> from RI

[Guest guest]

Here I thought it was just me in all of this. I was begining to think

that I was getting lazy and not getting enough exercise or something.

I am so happy to hear that I am not alone in this.

> You are definitely not alone - Showering (washing, shaving,

> shampooing, conditioning, rinsing) and the after-showering chores

(drying hair,

> lotioning body, dressing) take SO much time and is such a huge

effort for me that

> it's become an ordeal rather than a pleasure. And I don't have the

energy to

> even try putting on a little make-up after all this. How very sad.

> ~~

[Guest guest]

Not only is starting the day difficult, but after about 12 hours of being up and moving, I'm more than ready to call it a night by say, oh.....around 8 or 9 p.m? It took some time for my husband to understand that I wasn't going to bed so early because I was tired, but because my body was worn out and in pain! Just to be able to lie down can be bliss. Sad......but true.

~~

[Guest guest]

Me too - I am so glad that I decided to post how exhausting I

find starting the day to be. I thought it was just me being lazy too -

I am so relieved to find out that others struggle as well (that sounds

kind of selfish, but I hope you can read between the lines) Be Wll!

[Guest guest]

You didn't sound a bit selfish, I was relieved to find that others

were struggling too. So if you were being selfish, then so was I. ;-)

> Me too - I am so glad that I decided to post how exhausting

I

> find starting the day to be. I thought it was just me being lazy

too -

> I am so relieved to find out that others struggle as well (that

sounds

> kind of selfish, but I hope you can read between the lines) Be

Wll!

>

[Guest guest]

I can only lie down for three maybe four hours at a time, so when I go

to bed early, like 9:00, I am up for the day at 1:00am or sooner. It

is really lousy at that time because there isn't much to do. I find

myself watching a lot of tv in the middle of the night. I am getting a

lot of good books read and that is when I read the newspaper. I am

anxiously waiting for the day when I can get six to eight hours of

sleep again.

> Not only is starting the day difficult, but after about 12 hours of

being up

> and moving, I'm more than ready to call it a night by say,

oh.....around 8 or

> 9 p.m? It took some time for my husband to understand that I

wasn't going

> to bed so early because I was tired, but because my body was worn

out and in

> pain! Just to be able to lie down can be bliss. Sad......but true.

> ~~

[Guest guest]

Dear Dr. Bormann,

This is a naked solicitation for sales, which is not allowed on this list.

It also contains erroneous information.

Dr. Shoemaker, director of the Metabolic Screening Laboratory at the

St. Louis University School of Medicine says:

" Infrared is just heat. Heat is heat. Heat penetrates, but its nothing

exotic. A warm bath would do everything that they are claiming this

[infrared sauna] does. A warm bath makes people feel comfortable; doctors

recommend it. Its good for muscle strains and sprains; people use warm baths

in rehab. They're just selling it in a new and different way. "

Best of Health!

Dr. Saul Pressman

----------------------------------------------------------------------------

-----------

Re: ozone sauna decision to make?/reply to by Dr.B.

[Guest guest]

" ...he did poop a large amount on Friday...Then on Saturday he had a huge normal

stool....and now he has been going about every other day...wondering if you

would be interested in helping a mom here in ND who has a 1 yo with allergies to

milk, eggs, oats, wheat and something else...She isn't getting much help from

WIC...On a soy based formula now I think.... "

Hi, .

With regard to pooping, my daughter was expected (by her peds doc) to toilet

one over-ripe banana texture per day (it falls apart when she goes) -- and not

skip a single day -- to allow the intestine to heal and go back to their normal

size. This took months. We were told that, with her GI condition, she should

not skip a single day and no bulky/large solid stools -- just " normal " sized

very soft to mushy ones daily. She has been doing this for one year now and her

GI symtoms have significantly improved.

I am so sorry to hear about the mom that is facing food allergies with her

baby. Pin pointing food allergies is so difficult. I often find that moms are

eliminating more foods than is healthy (due to bad advice) or are not

eliminating particular foods when they should be. Unfortunately, food

allergies/intolerances is not my topic of expertise and I can't really give

advice to anyone that is not my client. My mom instinct tells me that she needs

a gastroenterologist that has experience working with food allergies (like Dr.

Putnam at Cincy). If this is not possible, I would suggest pointing her to a

couple of resources:

I believe that, depending on the state, a parent can make a request for

medically necessary formulas. Most kids with " true " milk protein allergies are

not given soy based due to the high risk of developing cross allergies. They

are typically given elemental formulas which can be ordered -- with a lot of

hassle and advocacy. In some states, all that is required is getting a doc to

out a form.

For example, see form for Texas:

http://www.dshs.state.tx.us/wichd/nut/pdf/Nconreq.pdf

Obviously, Children's Medical Services in her area and I know people that have

had success (though it did not come easy) with them:

http://www.nd.gov/humanservices/services/medicalserv/cshs/

To find an experienced dietitian in her area (which is probably not

financially feasible):

http://www.eatright.org/

Then, click on the link that says: " find a nutrition professional "

American Dietetic Association: 800/877-1600

The mom may be able to get nutrition information on-line fairly easily, but

getting what her child rightfully deserves may be the hard part due to the

terrible bureaucracy and such. She may have to lean on your advocacy muscles.

WIC dietitians don't seem to practice medical nutrition therapy (which the mom

needs) -- during my rotation with WIC, I observed that even well intentioned

dietitians have been forced into the role of govt. gatekeepers.

Feel free to cut/paste the links to her. As a mom, I really think she needs a

good gastro that " gets " allergy -- but it takes resources that she will have to

fight for with CMS.

So sorry that I can not help more than this.

Dani is doing well, all things considered, thanks. Yesterday, I totally

splurged and took her to Universal Studios in CA. We got this awesome pass

which allowed us to go to the front of every line! No crowds! It was so fun

and, I hope, it will give her some positive memories.

Take care,

mom to Cvider

[Guest guest]

Best wishes to everyone, especially . I have been following her

posts and hope she is feeling better having started HC. Regards (

The answer to that is NO, but thanks very much for thinking about

me