good morning

[Guest guest]

well that is good i'm galde that your are getting some releif

melissa

[Guest guest]

Hi Joanne,

I am guessing you know this already, but the non-glutenous grains

like quinoa and brown rice may be best.

>

> Hi girls,

>

> Well, I added some grains back in my diet out of desperation and

slept

> 12 hours. I can't believe that the diet was affecting me so much. I

> had so many good results in the first few months, with weight loss,

> increased focus, etc. etc. Then it just turned on me and my nervous

> system just couldn't handle it. I was detoxing too fast and breaking

> out in rashes all over. I hope to be able to work on this candida

> issue with some grains. I will have to search the archives for what

> works. I may go back on ThreeLac as I did have positive results with

> it. That program allows some fruit, grains and beans. What a luxury

it

> will be to start to eat again. Any suggestions? I hate to lose all

> that I have gained so far.

>

> Happy Sunday,

> Joanne

>

[Guest guest]

Joanne,

I am thrilled that you are feeling so much better! Hallelujah!

I think we've all learned something from your experience. Your body

needed something in the diet that you were not providing and it has

made a BIG difference for you to add it back in. I'm so glad you

discovered this.

It sounds like your job is absolutely perfect for you. Home-based

health care is going to continue to be in demand, so I think your job

is safe! God is our provider, is He not? I'm really happy for you

that things are looking better.

Hope you have no mold issues with your home. No symptoms is a great sign.

Patty

>

> I have been reading over the posts and watching the wonderful videos.

> Thank you. I wanted to report that I am sleeping better than ever. I

> am still tired but I have lots of hope. I added some grains into my

> diet and am managing to stay off all sugar and dairy. I never thought

> brown rice would be such a treat. I made it last night with some

> coconut milk, cinnamon and stevia and it was so good. I decided to try

> Candex last week and have been taking that on an empty stomach. It

> really seems to agree with me. Absolutely no die off symptoms. I just

> wonder if it is really doing something.

>

> So, I am back to work as a home nurse and one of my homes lets me

> paint while I am there. Her daughter is totally handicapped and sleeps

> most of the day. Perfect job for me! I get lots of down time and if I

> do have energy I can watercolor. I painted what I believe to be my

> best painting the other day. God is so good. I would love to send a

> copy of it but I don't know how. How do yo post pictures?

>

> Hope you are all well.

>

> Interesting articles about mold. I thought that I had that problem

> under my mobile home and actually had someone come out last week. We

> have to wait till the rain stops to really get under there and look.

> But, after reading your post, I see that I have none of those

> symptoms. That's good.

> Take care,

> Joanne

>

[Guest guest]

good morning everyone,

been reaing all the posts, feeling for you all who are suffering with

this awful disease. i wake up every morning hateing to get out of bed.

you know the feeling.... got to get up, ( or pee on myself), but it

hurts so bad you're crying with pain by the time you get there. then i

get to the kitchen to get my oxycontin. take one, along with two cups

of coffee. still can't move , after acouple of hours. then i take my

lortab( which is for breakthrough pain) . i can finally walk a little

bit. lord, sometimes i just hide in the bathroom and cry. my husband (

we've been married for nine years ), .... this is second marriage for

both of us. he is 67 and i'm 68..... he expects to be waited on like

a child, all the babying ..... plus he has a son and two grandkids

that i have to wait on too. all the cooking and all.... life for me

is one world of hurt.... and if i don't do for them, i will not have

a place to live. this is his house, i'm only here to do for him. to

take care of him.... i can't take care of myself anymore....

my dr. says i have severe OA and RA..... i know you all have the same

pains that i have. somedays i can't walk, or use my hands.

i hate to vent on ya'll, but sometimes i just have to talk to

somebody. it seem's like we all get desperate sometimes. there is no

magical cure for this disease, mine is getting worse everyday. for

those of you , that are younger, i hope and pray that there will be a

drug that will help you. they are coming out with new ones all the

time. i'm so scared to take all these new ones. the side effects are

scarey. i will just go on with something for pain, ..... i have a

little plaque in my kitchen that says " getting old is not for sissies

" .....lol... so true !!

i'm sooo glad i found this group !! there are young and older people

on here, its good for me to read how others are coping . i feel like

giving up so many times, then i come on here and see that others do

feel the same way. i want to tell you ALL.... don't give up !! do

like me,.... just come on here and cry to the group....lol.... so

sorry ya'll.....

have a blessed day,

betty

--

NUMBERS 6: 24-26

[Guest guest]

Hi Betty.  I am glad you feel comfortable enough to cry and vent here.  You

are certainly having a lot of pain and suffering, with no end in sight.  First,

what meds. are you on for your RA and for pain?  Second, have you discussed

your home situation with your Rheumy or your PCP doctor?

Third, I can truly see how hopeless you think your life is.  I will tell you a

llittle bit about me.

 

I have been married 30 years, a second marriage for both of us.  I made my

husband the King of the house.  Did everything for him, cooked all his favorite

meals, did what he wanted to do when he wanted to.  He was the love of my life

since the day we met.  We moved here to Florida due to my RA and I could not

tolerate the Cape Cod weather anymore.  The only thing we did not get in our

new home was a pool.  My RA was severe and I used to be a great swimmer.  My

Rheumy said I would benefit greatly from swimming each day.  My husband refused

to get a pool.  Money was not the issue.  He didn't want to dig up the lawn

and said it would look awful.  We had many disagreements over this. My RA was

unbearable each day.  I could hardly get out of bed or stand on my painful

feet.  I was struck the hardest with RA in my feet, ankles, hands and wrists. 

I could see myself

failing each day.

 

Then one night my husband did not come home until 6 a.m. in the morning.  What

a night of hell I had.  I called the hospitals and police to see if he was in

an accident or injured somewhere.  Well it was neither of these.  He had found

himself a white piece of trash, 40 something years old.  He is pushing 70.  My

son came down from N.H. for his dream job offer.  All this with my husband came

out while my son was living with us.  I was destroyed totally with all the

fights, heartaches of him leaving each day to go to his w---e.  My life and

marriage was going down the drain very quickly.  My attny. called me one

morning and I was in such a state, I could not stop crying. She told me I had to

get out of this situation as it was getting too stressful and dangerous to stay

there.  OMG, I was thinking, What am I going to do, where will I go, I have no

car, very low S.S.  I was not living, I felt

like I was dying.  My sons family sold the house in N.H. and he went home to

pack up all thier things, take 2 cats and 2 dogs and here to Florida.  When

they got here, we had no where to go.  My R.E. agent let us live in a home he

was selling.  My son and family said Mom you are coming with us to live and out

of the horrible situation you are in.  I was floored as I did not expect

this.  So Betty, here I am 2 years since I left my home and husband.  I was

divorced last Friday, and am still living with my family.  We found a beautiful

home with a pool and my life is so much better.  I can so relate to your home

situation.  I know you feel traped as I sure did.  I think you have to give

some serious thought to your life and how you can better it.  We are not meant

to be slaves, or do anything against our will.  Do you have senior housing in

your area?  I know they take a portion of your

income to live there.  A friend of mine made very little S.S. and they only

took a small amount each month and she had enough to live on.  I don't see how

you can go on with your life the way things are at your home.  I think you

really need to tallk with someone who can give you the help and support you

truly need.  I know it is scarey to think about going out on your own.  I am

sure the stress is killing you and making your RA worse.  I have been there and

have all the emotions you are feeling now.  You are worthwhile and so deserve

a much better life.  You probably think things will change, but I am sorry to

say, they won't.  Once someone has control over you, they don't want to let

that go.

I so pray you will really read what I have said, and really think about what you

need for your life

right now.  It almost killed me to see my 30 year marriage go down the drain,

start my life over at 70, and deal with a broken heart too.  But I wanted to

live more then I wanted to die.  That's what it boiled down to for me.

 

We have wonderful members here who truly care about all of us.  You will have

lots of love and support from all of us.  We are here for you.  I know you

feel trapped, and there is no solution for you.  That is not true.  That is

your fear talking.  I hope and pray you get the strength from within yourself,

and seek some help.  It is never too late to change our lives.  My thought and

prayers are with you.  I really do care about you.

 

Hugs,

 

Barbara

 

 

                                        \

                                        \

                                        \

                                        \

& n

bsp;                                      \

                                        \

                                        \

                                        \

   & nb

sp;    

[Guest guest]

Betty,  I don't mean to sound harsh but you have got to help yourself as it

seems noone in your family is going to do so.  First of of all get yourself a

good doctor.  A doc who only gives pain pills and nothing for the RA to reduce

the inflammation  isn't much of a doc.  Pain pills only mask the pain-they do

nothing about what is causing the pain and that is what needs to be addressed. 

Many of us take several meds with no side effects.  I would not be walking or

moving without meds to reduce the inflammation.  In fact a couple of months

back Ihad  to go off them for about three weeks because of a UTI   and I could

hardly move-moved like a 90 year old-i'm 57- could hardly get in and out of bed

or out of a chair or off the commode.  Today I have been moving mattress &

springs, cleaning under the bed, carrying laundry up and down the steps etc. 

With my meds I function- a bit more slowily  and get tired more quickly- but

life goes on and I'm

part of it.   Your husband needs to know that you have to have some help and

if he's unwilling then just don;t wiait on him-he will finally get the picture-

if you don't do it  he will eventually do it himself or it goes undone.  Oh he

will grip and fuss because it sounds like you have spoiled him and his son and

grandson.  Maybe if you get on the right med combo you can take care of them

again.  I love spoiling everyone in my family and did it for years but they now

know that some days mom just can't and have all really stepped up and been

great.  Sometimes I do have to remind them that I'm having a bad day but most

of the time now they can just tell.  Praying that you find some relief in all

stuations.  linda

From: bettygates tds.net <bettygates@...>

Subject: [ ] good morning

" " < >

Date: Friday, August 27, 2010, 9:52 AM

 

good morning everyone,

been reaing all the posts, feeling for you all who are suffering with

this awful disease. i wake up every morning hateing to get out of bed.

you know the feeling.... got to get up, ( or pee on myself), but it

hurts so bad you're crying with pain by the time you get there. then i

get to the kitchen to get my oxycontin. take one, along with two cups

of coffee. still can't move , after acouple of hours. then i take my

lortab( which is for breakthrough pain) . i can finally walk a little

bit. lord, sometimes i just hide in the bathroom and cry. my husband (

we've been married for nine years ), .... this is second marriage for

both of us. he is 67 and i'm 68..... he expects to be waited on like

a child, all the babying ..... plus he has a son and two grandkids

that i have to wait on too. all the cooking and all.... life for me

is one world of hurt.... and if i don't do for them, i will not have

a place to live. this is his house, i'm only here to do for him. to

take care of him.... i can't take care of myself anymore....

my dr. says i have severe OA and RA..... i know you all have the same

pains that i have. somedays i can't walk, or use my hands.

i hate to vent on ya'll, but sometimes i just have to talk to

somebody. it seem's like we all get desperate sometimes. there is no

magical cure for this disease, mine is getting worse everyday. for

those of you , that are younger, i hope and pray that there will be a

drug that will help you. they are coming out with new ones all the

time. i'm so scared to take all these new ones. the side effects are

scarey. i will just go on with something for pain, ..... i have a

little plaque in my kitchen that says " getting old is not for sissies

" .....lol... so true !!

i'm sooo glad i found this group !! there are young and older people

on here, its good for me to read how others are coping . i feel like

giving up so many times, then i come on here and see that others do

feel the same way. i want to tell you ALL.... don't give up !! do

like me,.... just come on here and cry to the group....lol.... so

sorry ya'll.....

have a blessed day,

betty

--

NUMBERS 6: 24-26

[Guest guest]

Verbal Dyspraxia actually makes more sense to me sometimes, because " A " is

the ABSENCE of speech, as compared to the " dys " which is the ABNORMAL

speech--- as you know well. LOL

So theoretically speaking, if a non-speaking child is dx'd with Apraxia,

once they have speech, shouldn't the dx be changed to DYSpraxia?

This has always confused me really, but then again, how many names can we

come up with which all means the same thing? I think we should get a

running list of all names we've ever heard before. ?? wouldn't that be fun?

:-)

The Dysgraphia was also what I was wondering though, because that is yet

another thing I've noticed that my own kids with Apraxia/Dyspraxia have!!!

It seems to go hand in hand (pun intended!!!) hahaha

before I forget-- I have to do an Asa update-- but I'm overwhelmed right

now so will hope to try for tonight.

-- did you know he had his ortho surgery?

Bek

In a message dated 3/19/2011 7:06:38 P.M. Eastern Daylight Time,

kiddietalk@... writes:

I just figured it's dyspraxia because goodness knows nobody would know how

to spell that just getting the diagnosis. 'Dysphraxia' kind of sounds like

it or she did a typo and added the extra h by mistake? And I know there

are some SLPs even in this country that diagnose verbal dyspraxia instead of

apraxia or use the two interchangeably

Carnell from our group who did outreach for years and who's story

is in The Late Talker book -her son was diagnosed with verbal dyspraxia by

Cary Speech in NC. ran verbaldyspraxia.com both online and with a

support group for years- and from wayback here it is again

[Guest guest]

Hi Crys and welcome! Sounds like you are so on it with all the evaluations so

good for you!! Your child is so fortunate! Just in case you need help with

insurance coverage with the exams I have info at our apraxia.org facebook page

here http://www.facebook.com/topic.php?uid=115029735601 & topic=13830

I wrote a book called The Late Talker

http://www.cherabfoundation.org/latetalkerbook/ which covers much of the basics

on what to do if your child is a late talker. You can go to Google books and

read some of it online for free. I know this may be a bit overwhelming -but you

don't have to know everything at once and it is great to know there are others

out there that are here to help. There is so much hope -and again ESPECIALLY for

parents like you out there searching for answers!

Most in our group have children that are mainstreamed by kindergarten and are

good students. So the prognosis with appropriate early intervention is extremely

promising and positive.

Here are two new member messages also from our apraxia.org facebook page which

may help:

http://www.facebook.com/topic.php?uid=115029735601 & topic=13085

or

http://www.facebook.com/topic.php?uid=115029735601 & topic=7329

After you read through them let us know what other questions or comments you

want to share!

Best!

=====

[Guest guest]

I just figured it's dyspraxia because goodness knows nobody would know how to

spell that just getting the diagnosis. 'Dysphraxia' kind of sounds like it or

she did a typo and added the extra h by mistake? And I know there are some SLPs

even in this country that diagnose verbal dyspraxia instead of apraxia or use

the two interchangeably

Carnell from our group who did outreach for years and who's story is in

The Late Talker book -her son was diagnosed with verbal dyspraxia by Cary

Speech in NC. ran verbaldyspraxia.com both online and with a support

group for years- and from wayback here it is again

http://replay.waybackmachine.org/20080406113605/http://www.verbaldyspraxia.com/

Chrys can answer for sure!

=====

[Guest guest]

I'm all for dyspraxia too- because it's a diagnosis name that eliminates 'it'

that shall not be named

http://www.facebook.com/topic.php?topic=15797 & post=106567 & uid=115029735601#post1\

06567

The dysgraphia is hard to say because when there are motor planning issues, lags

in development due to late talking in language...it all gets to be kooky how

many diagnosis names that could possibly be piled up when the root may all lie

in the dyspraxia (or apraxia whatever you call it)

Oh course I want to hear Asa's update!!! You have permission to be overwhelmed,

but I know of few who can do all you can -honestly don't know how you do all you

do Bek!!! Please do share when you can!

=====

[Guest guest]

Hi Crys and welcome! This group is the one place I can come to and know others

will understand and even be able to answer my questions. I used to feel so

alone. I have learned so much from the knowledgeable members in this group and

feel blessed. Yes I too recommend highly the late talker book. I used my book

so much as a reference that it looks like it went through a wind tunnel! Our

slp is a lifesaver and I hope you find someone for your child that you love as

well. Also look into fish oils and nv. There is information at

http://www.pursuitofresearch.org I agree about having hope. I never thought my

son at 6 would be speaking in full sentences that I don't have to translate!!!

and READING!!! Life is good. Kate

>

> Hi Crys and welcome! Sounds like you are so on it with all the evaluations

so good for you!! Your child is so fortunate! Just in case you need help with

insurance coverage with the exams I have info at our apraxia.org facebook page

here http://www.facebook.com/topic.php?uid=115029735601 & topic=13830

>

> I wrote a book called The Late Talker

http://www.cherabfoundation.org/latetalkerbook/ which covers much of the basics

on what to do if your child is a late talker. You can go to Google books and

read some of it online for free. I know this may be a bit overwhelming -but you

don't have to know everything at once and it is great to know there are others

out there that are here to help. There is so much hope -and again ESPECIALLY for

parents like you out there searching for answers!

>

> Most in our group have children that are mainstreamed by kindergarten and are

good students. So the prognosis with appropriate early intervention is extremely

promising and positive.

>

> Here are two new member messages also from our apraxia.org facebook page which

may help:

>

>

> http://www.facebook.com/topic.php?uid=115029735601 & topic=13085

>

> or

>

> http://www.facebook.com/topic.php?uid=115029735601 & topic=7329

>

> After you read through them let us know what other questions or comments you

want to share!

>

> Best!

>

>

>

>

> =====

>

[Guest guest]

Good morning everyone!

Thanks for all the responses! I think that it is Verbal Apraxia, but it has not

been officially diagnosed yet, and its just a working diagnosis at them moment.

She also has Sensory Integration problems (just had her OT eval on Wednesday)

and we think she has some underlying OCD. I am in the process of getting her a

full eval through the local Development and Disability Clinic so we have a

better idea of what is going on instead of bit and piece evals.

�

You guys are right that all this terminology is confusing! I am finally getting

it worked out in my head a bit!

�

Wonderful to have met you all,

Crys (Jenna, just over 2 years old)

>

> Hi Crys and welcome! Sounds like you are so on it with all the evaluations

so good for you!! Your child is so fortunate! Just in case you need help with

insurance coverage with the exams I have info at our apraxia.org facebook page

here http://www.facebook.com/topic.php?uid=115029735601 & topic=13830

>

> I wrote a book called The Late Talker

http://www.cherabfoundation.org/latetalkerbook/ which covers much of the basics

on what to do if your child is a late talker. You can go to Google books and

read some of it online for free. I know this may be a bit overwhelming -but you

don't have to know everything at once and it is great to know there are others

out there that are here to help. There is so much hope -and again ESPECIALLY for

parents like you out there searching for answers!

>

> Most in our group have children that are mainstreamed by kindergarten and are

good students. So the prognosis with appropriate early intervention is extremely

promising and positive.

>

> Here are two new member messages also from our apraxia.org facebook page which

may help:

>

>

> http://www.facebook.com/topic.php?uid=115029735601 & topic=13085

>

> or

>

> http://www.facebook.com/topic.php?uid=115029735601 & topic=7329

>

> After you read through them let us know what other questions or comments you

want to share!

>

> Best!

>

>

>

>

> =====

>