Re: Feeling Helpless

March 28, 2005

You can find Motrin in a liquid that actually taste good. We didn't want to

give motrin at first but the docters said that if you wait until the

pain starts then it takes longer to get rid of the pain. If you give it every

4-6 hours as shown on the box then it will help and she wont be in pain all the

time. What Shriners are you going to?

Alesha

7 systemic

Cobb <eacobb0706@...> wrote:

Today has been complaining of her elbow hurting. I also asked her

about standing for choir at church today because I noticed at one point she

was trying to keep weight off one of her legs. She said she hurt a lot and

almost felt like crying.

Unlike ’s Nonverbal Learning Disability and ADHD where I can find many

ways to help her, I feel with her joint pain there is almost nothing I can

do. She refuses to take Motrin saying she already takes enough pills and

doesn’t want to take more. The only time she has been willing to take the

Motrin was when she came home from school unable to bear any weight on one

leg because of heel and ankle pain due to overextending herself in PE (she

has a note to allow her to self regulate participation in PE until she is

seen at Shriner’s). I told her that if Shriner’s finds she has arthritis,

she would probably have to take a few more pills and she did not like this

idea.

Her appointment at Shriner’s is on April 19th. I wish it were sooner. At

least this is her month off (year-around school), so I don’t have to worry

about her overdoing PE again before she is seen at Shriner’s.

Beth

9.8 not yet diagnosed

March 28, 2005

Alesha,

Thanks for the suggestion. Since learned to swollow pills at 4

1/2 yrs old, she won't take liquid medication unless it is the only

way the medication is available.

The difficulty she has now is that she already takes 2 1/2 pills AM

and 3 1/2 pills PM and the she hates the idea of taking anymore pills.

will be going to Shriner's Children's Hospital of Northern

California.

Beth

9.8 not yet diagnosed

> Today has been complaining of her elbow hurting. I also asked

her

> about standing for choir at church today because I noticed at one

point she

> was trying to keep weight off one of her legs. She said she hurt a

lot and

> almost felt like crying.

>

> Unlike 's Nonverbal Learning Disability and ADHD where I can

find many

> ways to help her, I feel with her joint pain there is almost

nothing I can

> do. She refuses to take Motrin saying she already takes enough

pills and

> doesn't want to take more. The only time she has been willing to

take the

> Motrin was when she came home from school unable to bear any weight

on one

> leg because of heel and ankle pain due to overextending herself in

PE (she

> has a note to allow her to self regulate participation in PE until

she is

> seen at Shriner's). I told her that if Shriner's finds she has

arthritis,

> she would probably have to take a few more pills and she did not

like this

> idea.

>

> Her appointment at Shriner's is on April 19th. I wish it were

sooner. At

> least this is her month off (year-around school), so I don't have

to worry

> about her overdoing PE again before she is seen at Shriner's.

>

> Beth

> 9.8 not yet diagnosed

>

March 28, 2005

There is a shriner in northern cali? Where is it? I live near SF.

March 28, 2005

Coolness!!

March 28, 2005

It was in San Francisco from 1923 to 1997. In 1997 they open a new

hospital in Sacramento and closed the San Francisco hospital. The

hospital is next to the University of California, Medical

Center. It is the only Shriner's that has all three specialties.

> There is a shriner in northern cali? Where is it? I live near SF.

>

August 8, 2008

Jen,

You are a wonderful compassionate friend. We could all use a Jen in

our lives. I know Sara is so thankful to have you in hers.

Shirley

>

> One of my best friends, Sara, has been living with RA for many

years.

> When we were kids I never really understood what RA meant and what

> she was going through. In the mind of a child (who didn't know any

> better) I just knew here fingers and toes looked different from

mine.

> As we grew older and I saw more of the pain and agony this

condition

> caused her, I fealt completely helpless. It just seemed so unfair.

I

> came to battle for her whenever a " dumb boy " would ever say

anything

> to make fun of her feet if she dared to wear sandles. Now, as

adults

> I search endlessly for something that will help. I'm kind of a

> naturalist and can't stand all of the meds she is constantly

pushing

> into her system. I finally found something that seems to be

helping

> with the inflammation. It's a juice blend called MonaVie. From

what I

> understand, it's the highest level of antioxidants and

phytonutrients

> of anything on the market because of it's freeze-dried process. I

> would recommend this juice to anyone who suffers from joint pain

or

> inflammation. If you want anymore info. on it I'd be glad to get

you

> more if you email me. For all of you that suffer like Sara, I pray

> that something, anything can help you live your days with less

pain.

> If this stuff is the miracle it seems to be so far, I will be

forever

> grateful.

>

> Good luck and wishes to you all.

>

> ~Jen

>

August 8, 2008

Hi, Jen. You are a good friend to Sara. There are so many people who

just don't understand this disease and totally discount how we are

feeling on a daily basis. Sara is lucky to have a friend like you.

As for the MonaVie, I am glad that Sara is getting some relief with

it. I tried it and it did nothing for me. I guess that's just a

testament to how our bodies are so different and how we respond to

different things. I guess that's why RA is so hard to treat in that

it is very difficult to find the right blend of meds that will not

only give us relief, but help to prevent the damaging effects of RA.

Thank you for sharing your story....Doreen

>

> One of my best friends, Sara, has been living with RA for many

> years. When we were kids I never really understood what RA meant

> and what she was going through. In the mind of a child (who didn't

> know any better) I just knew here fingers and toes looked different

> from mine.

> As we grew older and I saw more of the pain and agony this

> condition caused her, I fealt completely helpless. It just seemed

> so unfair. I came to battle for her whenever a " dumb boy " would

> ever say anything to make fun of her feet if she dared to wear

> sandles. Now, as adults I search endlessly for something that will

> help. I'm kind of a naturalist and can't stand all of the meds she

> is constantly pushing into her system. I finally found something

> that seems to be helping with the inflammation. It's a juice blend

> called MonaVie. From what I understand, it's the highest level of

> antioxidants and phytonutrients of anything on the market because

> of it's freeze-dried process. I would recommend this juice to

> anyone who suffers from joint pain or inflammation. If you want

> anymore info. on it I'd be glad to get you more if you email me.

> For all of you that suffer like Sara, I pray that something,

> anything can help you live your days with less pain.

> If this stuff is the miracle it seems to be so far, I will be

> forever grateful.

>

> Good luck and wishes to you all.

>

> ~Jen

>

August 8, 2008

Thanks Shirley! I try to be as supportive as I can. I know she would

do the same for me.

Jen

> >

> > One of my best friends, Sara, has been living with RA for many

> years.

> > When we were kids I never really understood what RA meant and

what

> > she was going through. In the mind of a child (who didn't know

any

> > better) I just knew here fingers and toes looked different from

> mine.

> > As we grew older and I saw more of the pain and agony this

> condition

> > caused her, I fealt completely helpless. It just seemed so

unfair.

> I

> > came to battle for her whenever a " dumb boy " would ever say

> anything

> > to make fun of her feet if she dared to wear sandles. Now, as

> adults

> > I search endlessly for something that will help. I'm kind of a

> > naturalist and can't stand all of the meds she is constantly

> pushing

> > into her system. I finally found something that seems to be

> helping

> > with the inflammation. It's a juice blend called MonaVie. From

> what I

> > understand, it's the highest level of antioxidants and

> phytonutrients

> > of anything on the market because of it's freeze-dried process. I

> > would recommend this juice to anyone who suffers from joint pain

> or

> > inflammation. If you want anymore info. on it I'd be glad to get

> you

> > more if you email me. For all of you that suffer like Sara, I

pray

> > that something, anything can help you live your days with less

> pain.

> > If this stuff is the miracle it seems to be so far, I will be

> forever

> > grateful.

> >

> > Good luck and wishes to you all.

> >

> > ~Jen

> >

>

August 8, 2008

Doreen,

I'm sorry to hear that MonaVie didn't work for you. You are right, it

is hard to find one thing that works for eveyone. I wish it wasn't

such trial and error all the time. As if you aren't already dealing

with enough, but you have to constantly being trying new things all

of the time. Were you drinking MonaVie for at least a month? I know

it took just over a month before Sara noticed relief. I actually

drink it myself just because it's a convenient way to meet the

nutritional requirements that my body needs from fruit daily. It puts

cancer causing free radicals into a self-destruct mode, which is

enough reason for me to keep drinking! Best wishes to you with the

treatment of RA. If ever I hear of something else that may be

helpful, I will pass it along as well.

Jen

> >

> > One of my best friends, Sara, has been living with RA for many

> > years. When we were kids I never really understood what RA meant

> > and what she was going through. In the mind of a child (who

didn't

> > know any better) I just knew here fingers and toes looked

different

> > from mine.

> > As we grew older and I saw more of the pain and agony this

> > condition caused her, I fealt completely helpless. It just seemed

> > so unfair. I came to battle for her whenever a " dumb boy " would

> > ever say anything to make fun of her feet if she dared to wear

> > sandles. Now, as adults I search endlessly for something that

will

> > help. I'm kind of a naturalist and can't stand all of the meds

she

> > is constantly pushing into her system. I finally found something

> > that seems to be helping with the inflammation. It's a juice

blend

> > called MonaVie. From what I understand, it's the highest level of

> > antioxidants and phytonutrients of anything on the market because

> > of it's freeze-dried process. I would recommend this juice to

> > anyone who suffers from joint pain or inflammation. If you want

> > anymore info. on it I'd be glad to get you more if you email me.

> > For all of you that suffer like Sara, I pray that something,

> > anything can help you live your days with less pain.

> > If this stuff is the miracle it seems to be so far, I will be

> > forever grateful.

> >

> > Good luck and wishes to you all.

> >

> > ~Jen

> >

>

August 9, 2008

Hi Jen and Group

I was wondering if you can find MonaVie at any health food store?At

this point I am willing to try ANYTHING!!!My RA doc tells me I can try

what I want but in her experience you need to take the meds.I

considered taking natural remedies and that was her response.

May 25, 2012

,

Â

I first began having symptoms at your age; now thirty years and over 10,000

meals later, I am still hanging in there with the type of esophagus you have now

at 32. How many more meals can you endure?

Â

If it was an easy matter to remove the bottom of the esophagus and attach it at

that point to the stomach I am sure that doctors would be doing it.

Remember, you still have the Lower Esophageal Sphincter (LES) in there that

opens and closes (or mostly closes).

Â

Most importantly, that I want you to take away from this is that you are not

going to die from this disease. There are always options, and there will be more

as time goes on.

Â

What I would like to know from you right now is what is your quality of life?Â

Can you get food down most of the time? Do you struggle all the time when

eating? Are you able to sleep normally, given enough pillows?Â Please give us

as much information about yourself, and perhaps we can all put our collective

wisdom together and make you feel better about your prospects.

Â

________________________________

From: Mike Young <mmyoung5758@...>

achalasia

Sent: Friday, May 25, 2012 1:42 PM

Subject: Re: Feeling Helpless

Â

Oh I am so sorry your struggling right now. Everyone manages the disease

differently. Have you gone to some good specialists? Dont give up...we have lots

of very seasoned knowledgable Â people here.Maureen

From: amandatroff <amandatroff@...>

Subject: Feeling Helpless

achalasia

Date: Friday, May 25, 2012, 12:31 PM

Â

I read everyone's posts daily and they make me feel better, thank you. Am I the

only one having trouble accepting that I will die from this disease? My E has

made the L or sharp corner where food can block and began deforming and I still

won't accept that I have a major problem. Once the deforming has happened why

can't they just take the bottom part off and hook up to stomach?? What are the

odds I can live another 20 years with this? After my last consult I have tried

most of the things suggested on here, like drinking Coke to clean it out. It

does seem to help me. I feel so confused about what I should be doing to ensure

I live longer. How long can a person live with a feeding tube? I am only 32 and

nowhere near ready to move on...

May 25, 2012

I don't know how helpful this will be for you but it was helpful for me. I

found a study in a thoracic journal that indicated the mortality rate from

achalasia was quite low. I can't remember the number but if you like, I can try

and find the study again. It was on OVID, a medical search web site. I also

have similiar fears as you.

Feeling Helpless