Re: Digest Number 1168

[Guest guest]

I just wanted to thank everyone for their help....I have so grateful for

all the responses to my letter...Thank you all so very much.

Lynn

[Guest guest]

re: VB schools

In the Detroit Michigan area Beaumont hospital has a program for

preschoolers with autism that uses techniques outlined by Sundberg &

Partington. It's not a school, but a Hands-On Parent Education (HOPE)

Center where parents accompany their children to a preschool-type

setting three hours a day for 12 weeks. Parents are taught how to

implement their children's individualized curriculum (designed using the

ABLLS). The small group setting allows structured opportunities to

target social interactions among children. In the first month, HOPE

Center staff use modeling and coaching to teach parents basic

techniques. As parents become more independent in the second month, they

are taught to implement data collection systems to monitor their

children's progress. In the final month, parents learn how to

transition the intervention to their home. They receive ongoing

consultation after " graduation " from the HOPE Center. If anyone is

interested in this model, please call 248-691-4712 for more details or

see

http://www.beaumonthospitals.com/pls/portal30/cportal30.webpage?l_recent=center_\

hope

>>> < > 03/29/03 04:36PM >>>

[Guest guest]

Hi, everyone,

My name is Adrienne. I joined this group in 2001, but I haven't posted for a really long time. I was diagnosed with Achalasia when I was 16 (I'm 19 now). I had pneumonia and food in my lungs from regurgitation, and the botox injections and dilatations didn't work, so I had a heller myotomy and partial fundalplication. I decided not to have the surgery done laproscopically, at my doctor's suggestion, which was a good choice for me.

The surgery was in 2001, and everything had been going pretty well afterwards. I didn't get food stuck very often, heartburn was kept to a minimum, and I rarely refluxed. I also found tap dancing helped to push the food down...don't ask me why...maybe all that pounding. Anyway, I'm a sophomore at Cornell, leading a really busy life, and all of a sudden my symptoms have come back. I feel like everything is spiraling out of control. I just can't do all nighters, I can't focus without eating, I can't sleep with the refluxing, and all my meals are with big groups of people, which gets really complicated. I'm 3000 miles away from my family, home, and doctor, and no one here seems to understand what's going on. I spend my time convincing my friends I'm not anorexic. I went to student health, and they told me it was completely stress related and I should just calm down. This, of course, was after I explained what Achalasia was. Clearly, I'm very frustrated.

I was wondering if anyone had any suggestions for me. Is it too early to have another myotomy? I'm still trying to get in contact with my doctor from home. I doubt dilatations and botox injections would work since they didn't help last time for more than a week or two. I'd rather not have to leave school for a semester to take care of this, but I'm not sure if I can hold out til the summer. I read suggestions about how to deal with eating and digestion posted by . Those were very helpful reminders. I was wondering if anyone has any more ideas, either in terms of how to eat, what to eat, or what treatment to seek out next. I guess my biggest complaints are heartburn and refluxing. And the "stuck" feeling I can't think of another way to explain, but I'm sure you understand. Anyway, thanks for listening...

Adrienne

[Guest guest]

Adrienne

I had one lap myotomy in 2001 Dec...it was a total screw up...I then had another in Sept of 2002. Which the second was an open procedure. So my two were less then a year apart. Not very fun that year..but i had to have it done. If you have any questions...please feel free to email me..Or just post, I'm sure some of us can at least tell you our stories

In Indiana

[Guest guest]

In a message dated 10/31/2003 6:02:36 AM Central America Standard Ti, andi637@... writes:

I went to student health, and they told me it was completely stress related and I should just calm down.

Adrienne, print out some medical articles from the net and maybe

some stories here from the group, take them to student health

and insist they educate themselves.

Hugs,

Maggie

[Guest guest]

Adrienne,

My list of foods that get me through are almost identical to Debbi's.

Also I would add milk & milkshakes. Milk has a lot of protein

(relatively speaking) and calcium. Munch all the time in little bits

with lots of water, rather than try to force down a meal in front of

everyone. I used to carry all sorts of stuff in my backpack and when

I had a moment alone I would eat something really small. I no longer

do meals. I " graze " to get enough. I know what a stigma this can all

be, especially in college. If you eat things like milkshakes it

is " taboo " because people look at you funny like you are binging and

if you lose a lot of weight or do not eat like everyone else then you

are anorexic. Be strong and forget what others think .... you know

the truth.

Make sure you get enough to keep you going. I didn't in my senior

year and started having problems concentrating and dizzy spells. My

last semester was a huge struggle. I had not yet been diagnosed with

A. In fact I had a doctor tell me the same thing .... it is the

pressures of school and being away from home etc. etc. It is all in

your head.

Perhaps at the Christmas break you can get an appointment with your

GI back home? You need to know what is going on and not start

aspirating and have pneumonia on top. It will at least give you peace

of mind.

All the best .... in Texas

> Hi, everyone,

>

> My name is Adrienne. I joined this group in 2001, but I haven't

posted for a

> really long time. I was diagnosed with Achalasia when I was 16 (I'm

19 now). I

> had pneumonia and food in my lungs from regurgitation, and the

botox

> injections and dilatations didn't work, so I had a heller myotomy

and partial

> fundalplication. I decided not to have the surgery done

laproscopically, at my

> doctor's suggestion, which was a good choice for me.

>

> The surgery was in 2001, and everything had been going pretty well

> afterwards. I didn't get food stuck very often, heartburn was kept

to a minimum, and I

> rarely refluxed. I also found tap dancing helped to push the food

down...don't

> ask me why...maybe all that pounding. Anyway, I'm a sophomore at

Cornell,

> leading a really busy life, and all of a sudden my symptoms have

come back. I feel

> like everything is spiraling out of control. I just can't do all

nighters, I

> can't focus without eating, I can't sleep with the refluxing, and

all my meals

> are with big groups of people, which gets really complicated. I'm

3000 miles

> away from my family, home, and doctor, and no one here seems to

understand

> what's going on. I spend my time convincing my friends I'm not

anorexic. I went

> to student health, and they told me it was completely stress

related and I

> should just calm down. This, of course, was after I explained what

Achalasia was.

> Clearly, I'm very frustrated.

>

> I was wondering if anyone had any suggestions for me. Is it too

early to have

> another myotomy? I'm still trying to get in contact with my doctor

from home.

> I doubt dilatations and botox injections would work since they

didn't help

> last time for more than a week or two. I'd rather not have to leave

school for a

> semester to take care of this, but I'm not sure if I can hold out

til the

> summer. I read suggestions about how to deal with eating and

digestion posted by

> . Those were very helpful reminders. I was wondering if anyone

has any

> more ideas, either in terms of how to eat, what to eat, or what

treatment to

> seek out next. I guess my biggest complaints are heartburn and

refluxing. And the

> " stuck " feeling I can't think of another way to explain, but I'm

sure you

> understand. Anyway, thanks for listening...

>

> Adrienne

[Guest guest]

Adrienne wrote:

>...Is it too early to have another myotomy? ...

I think time is irrelevant, it is the symptoms that matter.

>...I doubt dilatations and botox injections would work since they didn't

>help last time for more than a week or two. ...

Probably true for the botox, may not be true for dilatation. If you need a

fix now and can't take time out for surgery, dilatation may be an option.

It may be that they only used a small size before. I would check into what

size was use and if it is appropriate for you to try a larger one. The risk

of perforation goes up with size and from complications from past

procedures. If you have a perforation your recovery time will be longer

than from a myotomy.

>...I read suggestions about how to deal with eating and digestion ...

Remember we are all different in what works for us. Take from the

suggestions what works for you and avoid any guilt or frustration they

could otherwise lead to. Many here have noticed that stress does make a

difference, so don't stress out about what to eat. Some people here have

suggested chocolate. It melts so it is easy to get past the LES and

provides calories if you are loosing too many pounds, or need the energy.

People with GERD are told to stay away from chocolate because it can relax

the LES. I don't know if it relaxes the LES for anyone with achalasia,

would be nice, but at least it is fun food. Others like ice cream, pudding,

shakes and smoothies. Some like greasy foods or foods with a lot of butter

or mayonnaise to help it slide down and through the LES. Me, I have to

minimize my intake of all this great stuff for other reasons. :-( I do

put a lot of oil on my salad. A lot of us find carbonated drinks work

better than flat water to get food down, but that backfires for some. As to

what to avoid, if you find avoiding something helps then that is the thing

to avoid. If you can't tell it is helping to avoid something, then why

bother. You could avoid almost everything and end up eating just vegetable

baby foods, and still be just as miserable. As far as things sitting in the

esophagus effecting the nerves of the esophagus, other than acid, (some

foods produce acid when fermenting), I haven't seen any research on it, and

I think that speculation about it is just speculation. If you are able to

drink enough through the day to wash the acid away then why worry, if not,

there is always tums. Enjoy your meals as much as you can. I hope this helps.

notan

[Guest guest]

I was wondering if one could dip real petals in m & P for these rose petals.

Has anyone tried it? I just thought this would be a neat idea, and was only

reading about fake petals.

Thanks, Miranda C²

<http://mc2productions.com/contact/contact.htm>

Click; Send Comment;

Receive 25% Off Coupon

[Guest guest]

Hi Miranda,

I like to work with dried to somewhat dried flower material in some of the soaps

that I have made. It's pretty much like blanching or shocking fresh greens when

your cooking; they lose some of their color. Unfortunately, most flower petals

are far more delicate than your average greens and tend to lose most of their

color shortly after being exposed to the heat of the soap. They also tend to

lose most of their form/rigidity.

Since many roses are deep in color, they may retain a bit more of their natural

color than other flower petals. They will definitely not be as vibrant as they

were, but they might work out. I would probably try to wait a bit longer before

dipping the fresh petals and give the soap a chance to cool down a bit, but

still be a decent dipping consistency. Sounds like a good afternoon experiment

to try though. Who knows, maybe you'll like the outcome. There's always the

trade off to consider if they work - fresh petals as opposed to silk...Some

people might prefer that. Maybe somebody else out there has tried this with the

fresh rose petals before and would have some tried and true hints....

Good Luck!

:^)

RE: Digest Number 1168

I was wondering if one could dip real petals in m & P for these rose petals.

Has anyone tried it? I just thought this would be a neat idea, and was only

reading about fake petals.

Thanks, Miranda C²

<http://mc2productions.com/contact/contact.htm>

Click; Send Comment;

Receive 25% Off Coupon

[Guest guest]

Hi Miranda,

if you used fresh rose petals in m & p, the petals would grow mouldy,

and dried petals will turn brown, that's why you've only seen

references to silk or fabric petals

Jools

> I was wondering if one could dip real petals in m & P for these rose

petals.

> Has anyone tried it? I just thought this would be a neat idea, and

was only

> reading about fake petals.

> Thanks, Miranda C²

[Guest guest]

In a message dated 9/4/04 7:22:31 AM Mountain Daylight Time,

SSRI medications writes:

> Bush is the top recipient of industry employees' donations, raising at

> least

> $870,000 compared with about $350,000 for the No. 2 beneficiary, Democratic

> rival Kerry (news - web sites).

> __

>

Follow the money. Don't import those bogus drugs from Canada or Mexico

where they are whipped up in someone's garage and then slapped with the same

labels we get here. DO THEY ACTUALLY THINK WE BELIEVE ALL THIS B.S.??? Not

buying

cheaper drugs in Canada or Mexico is all about putting more money inthe

coffers of Big Pharma and has nothing to do with what's good for our citizens.

" Blind Reason "

a novel of pharmaceutical intrigue

Think your antidepressant is safe? Think again. It's

Unsafe At Any Dose

[Guest guest]

In a message dated 9/4/04 7:22:31 AM Mountain Daylight Time,

SSRI medications writes:

> When the narcissistic boss

> gets his (or her) feelings hurt, perceives he has been slighted in any way,

> or is threatened that an employee's abilities might be better than his own,

> he will overreact with a rage that leaves terror in his wake. Everyone knows

>

> when the boss is having a temper tantrum and all do whatever possible to

> stay out of the path of the hurricane

Sounds like SSRIs to me. LOL

" Blind Reason "

a novel of pharmaceutical intrigue

Think your antidepressant is safe? Think again. It's

Unsafe At Any Dose

[Guest guest]

In a message dated 9/4/04 7:22:31 AM Mountain Daylight Time,

SSRI medications writes:

> When the narcissistic boss

> gets his (or her) feelings hurt, perceives he has been slighted in any way,

> or is threatened that an employee's abilities might be better than his own,

> he will overreact with a rage that leaves terror in his wake. Everyone knows

>

> when the boss is having a temper tantrum and all do whatever possible to

> stay out of the path of the hurricane

Sounds like SSRIs to me. LOL

" Blind Reason "

a novel of pharmaceutical intrigue

Think your antidepressant is safe? Think again. It's

Unsafe At Any Dose

[Guest guest]

In a message dated 9/4/04 7:22:31 AM Mountain Daylight Time,

SSRI medications writes:

> I think both parties need to wake the hell up.

>

>

We're doomed no matter who gets elected this fall. It used to be that one

voted for the lesser of two evils, now it's the evil of two lessers.

" Blind Reason "

a novel of pharmaceutical intrigue

Think your antidepressant is safe? Think again. It's

Unsafe At Any Dose

[Guest guest]

In a message dated 9/4/04 7:22:31 AM Mountain Daylight Time,

SSRI medications writes:

> I think both parties need to wake the hell up.

>

>

We're doomed no matter who gets elected this fall. It used to be that one

voted for the lesser of two evils, now it's the evil of two lessers.

" Blind Reason "

a novel of pharmaceutical intrigue

Think your antidepressant is safe? Think again. It's

Unsafe At Any Dose

[Guest guest]

>

>

>Message: 6

> Date: Tue, 18 Jan 2005 12:41:59 -0700

> From: Kathy Huget <etna@...>

>Subject: OFF topic

>

>Is there anyone here on melatonin and if so how many mgs do you take

>and how long did it take to start working? I took some last night and

>it (sublingual melatonin) had the effect of sucking on a mint

>Approx. had 1 1/2 hrs sleep last night and am desperate to improve

>that.

>

>Kathy H.

>

>

Kathy,

I do not take Melatonin every day. When I take it, it's in capsule form. I

take 3-6 mg, depending on how I'm feeling at the time. (Whether or not I

think I'm going to have trouble falling asleep for some reason.) It either

works right away (meaning that I'm sleepy almost right away and asleep

within half an hour) or it doesn't work at all. At least that's how it

works for me.

Sleep is one of the things I hate about MS. I have always had trouble

falling asleep part of the time, but I used to fall asleep and be dead to

the world for 8 hours. Then I was diagnosed with MS in 1996. At present, I

fall asleep reasonably quickly most of the time, but since the time of my

diagnosis I have always woken up many times during the night. You get your

best sleep after you have been asleep for about 4 hours, but I can count on

one hand the number of times I have slept for longer than 4 hours since my

diagnosis. Very, very frustrating, especially when I'm working and the

alarm clock goes off at 5:00 in the morning.

Vali

[Guest guest]

>

Thanks Vali,

I will give it a try again. Fortunately Im not working so no real

pressure just hate feeling like a zombie. Plus Im sure it would help

my symptoms a bit to get more sleep.

Kathy

> Kathy,

>

> I do not take Melatonin every day. When I take it, it's in capsule

> form. I

> take 3-6 mg, depending on how I'm feeling at the time. (Whether or

> not I

> think I'm going to have trouble falling asleep for some reason.) It

> either

> works right away (meaning that I'm sleepy almost right away and asleep

> within half an hour) or it doesn't work at all. At least that's how it

> works for me.

>

> Sleep is one of the things I hate about MS. I have always had trouble

> falling asleep part of the time, but I used to fall asleep and be

> dead to

> the world for 8 hours. Then I was diagnosed with MS in 1996.  At

> present, I

> fall asleep reasonably quickly most of the time, but since the time

> of my

> diagnosis I have always woken up many times during the night. You get

> your

> best sleep after you have been asleep for about 4 hours, but I can

> count on

> one hand the number of times I have slept for longer than 4 hours

> since my

> diagnosis. Very, very frustrating, especially when I'm working and the

> alarm clock goes off at 5:00 in the morning.

>

> Vali

>

>

>

>

>

[Guest guest]

Hello, Everyone--

Just a quick note to you all...I have stage IV chondromalacia, plus systemic

lupus. Both of these conditions were misdiagnosed for years (CP for much longer

than the lupus.) In addition, after years of prednisone use for dealing with

lupus symptoms, the cartilage in my knees is pretty much destroyed, and I have

OA in both knees following a car accident 20+ years ago (my knees were jammed

into the steering column.)

OK, so that sets the stage. Last week I saw a news report on our local TV news

(I live in the Chicago area) about a new device that controls pain and even

regenerates lost cartilage. (!) I looked it up; it looks like a TENS unit hooked

up to knee braces. Here's the link: http://www.bionicare.com/ab-overview.php

At any rate, my doctor knows an orthopod who worked on the clinical trials.

I'm going to try the thing--it can't make things worse, and although it will

take time to see if it works, in that same amount of time I'd probably be the

same or worse, so what have I got to lose?

Best wishes to you all--

Raven

chondromalacia treatment wrote:

There is 1 message in this issue.

Topics in this digest:

1. Pennsaid creme - how safe is it??

From: " dougfromct2002 "

________________________________________________________________________

________________________________________________________________________

Message: 1

Date: Sat, 14 Jan 2006 14:24:51 -0000

From: " dougfromct2002 "

Subject: Pennsaid creme - how safe is it??

This was E-mailed to me by accident. It was intended to be posted

from " cedarforest001 " .

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

Hi there. I have been living with knee pain for over four years, had

all the conventional and non-conventional treatments...

Yesterday for the first time I broke down and used Pennsaid creme, it

was a real life saver. No pain! But how safe is this stuff? Does anyone

know?

Thanks,

Helen

________________________________________________________________________

________________________________________________________________________

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

[Guest guest]

Raven, let us know how that goes. Best of luck.

Joya

Pennsaid creme - how safe is it??

This was E-mailed to me by accident. It was intended to be posted

from " cedarforest001 " .

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

Hi there. I have been living with knee pain for over four years, had

all the conventional and non-conventional treatments...

Yesterday for the first time I broke down and used Pennsaid creme, it

was a real life saver. No pain! But how safe is this stuff? Does anyone

know?

Thanks,

Helen

________________________________________________________________________

________________________________________________________________________

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

[Guest guest]

That is what has me so upset. The fact that our reps, senators and gov use

people with disabilities and their families in the budget game is so so

wrong and cruel. Nora

In a message dated 6/15/2009 10:48:50 AM Central Daylight Time,

IPADDUnite writes:

Wonderful pieces, truly sad and inspirational. What touches me most is the

concern and fear expressed by the individuals with disabilities.Wo

Ellen

**************An Excellent Credit Score is 750. See Yours in Just 2 Easy

Steps!

(http://pr.atwola.com/promoclk/100126575x1221823265x1201398681/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=62 & bcd=Jun

eExcfooterNO62)

[Guest guest]

Yes it is Nora.

I keep forgetting to mention...along with calls to Representatives and Senators,

PLEASE call the leaders...

Madigan, Cullerton, Rodogno and Cross...all VERY important and instrumental in

all of this.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Digest Number 1168

That is what has me so upset. The fact that our reps, senators and gov use

people with disabilities and their families in the budget game is so so

wrong and cruel. Nora

In a message dated 6/15/2009 10:48:50 AM Central Daylight Time,

IPADDUnite writes:

Wonderful pieces, truly sad and inspirational. What touches me most is the

concern and fear expressed by the individuals with disabilities.Wo

Ellen

**************An Excellent Credit Score is 750. See Yours in Just 2 Easy

Steps!

(http://pr.atwola.com/promoclk/100126575x1221823265x1201398681/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=62 & bcd=Jun

eExcfooterNO62)