Intro

December 9, 2001

Tana Cothran wrote:

> Hi,

> I have been lurking for a couple of weeks to get to know everybody and

> to

> see if I was in the right place. I believe I am.

>

> I live on a small farm in the Missouri Ozarks with my husband and my

> two

> daughters, na, who is 5 and on the spectrum, and Morrigan, who is

> 2 and

> NT. Morrigan had a reaction to her shots at 4 months, seized and

> passed out

> within 30 seconds. The nurse that gave them to her flatly denied the

> reaction and even said " I have given hundreds of shots and have

> *never* seen

> a reaction. " (so that meant mine couldn't even be that rare one they

> talk

> about in their crappy literature). When I started doing research on

> the net

> about shot reactions I found much more info than I had anticipated,

> namely

> what had been going on with my older daughter, na. na had

> not had

> the immediate reaction that Morrigan had had, but had been having

> reactions

> none the less, with each round of shots making her steadily worse. I

> feel

> horrible knowing (now) that I had poisoned my own daughter, and very

> thankful I had not killed her, which is probably what would have

> happened on

> her next round.

I just wanted to state

You did not poison her, the shot did.

We trust the Dr's and government to make rational descsions for us, (why

else would they get paid so much money?) unfortunately this may be one

decision that has been ifluenced too much from the manufacturers and

overzealous officials.

I know, I went through that same feeling.

> Morrigan saved her sister's life. na has had a few

> diagnoses', the first was PPD-NOS at 3 yrs. old, at that time we were

> told

> she would never be able to take care of herself. The next, at 3 1/2

> yrs.,

> was just Autism, and with training she would be able to take care of

> herself. The next one, at 4 yrs., was HFA with language issues. Mind

> you, I

> didn't ask for all of these, but every new doc had to re-diagnose her

> as

> though I didn't know she was autistic. The last one really infuriated

> me, 4

> 1/2 yrs., Autistic, we were referred to him *because* she was autistic

> NOT

> because we needed yet another diagnoses. She had a real illness that

> needed

> to be dealt with that he was blowing off because she was autistic, the

> next

> doc did the same thing, she even said " She is autistic, that's

> normal. " I

> have NO problem walking out of doctors offices, I have gone as far as

> destroying the file in front of them before I do.

>

cool

>

> I still have not found a local (within 1 1/2 hours drive) doc for my

> girls

> after a year here. I do however have an appointment with a DAN doc in

> Arkansas the 21st of Dec. I called a few, and besides the drive to

> on

> AR is a little less than half the drive to KC or St. Louis, the

> receptionist

> seemed to know more and care more about autism than most docs I have

> had the

> misfortune of seeing. na steadily gets better on her own, she

> has,

> thankfully, not many health issues. After a lot of research I *am*

> sure she

> is mercury toxic. I have also discovered that I am mercury toxic also,

> and I

> have a mouthful of amalgam, but that wasn't what did it. Other than

> not

> having language delay, I was a textbook case autistic as a child. I

> was

> never diagnosed, my odd behavior was explained away... I toe walked

> because

> I wanted to be a ballerina was one. The first time I heard my mom say

> that I

> didn't know what a ballerina was, but she was Mom, she must be right.

> There

> was more, but I won't get into it, this is long enough.

>

> I want to thank you all for your stories and your questions, I won't

> have to

> ask as many and I don't feel as I am the only one trying to help my

> child

> get better.

>

> Tana

>

> " All truth goes through three stages. First it is ridiculed. Then it

> is

> violently opposed. Finally, it is accepted as self-evident. "

> (Schoepenhouer)

>

keep fighting!

December 10, 2001

Hi Tana,

Welcome to the list. This has been such a wonderful source of information

for me--I hope you get as much out of it as I do.

I live in Springfield, MO and we have a wonderful pediatrician. She's

fairly new in town--we only found out about her a few months ago and

switched over. She is doing a great job in overseeing chelation for both of

our ASD kids. You didn't mention where in the Ozarks you are but you can't

be too far away--I'd love to hear from you! Please email me at

rfcshreffler@....

Best wishes,

Rita Shreffler

[ ] Intro

> Hi,

> I have been lurking for a couple of weeks to get to know everybody and to

> see if I was in the right place. I believe I am.

>

> I live on a small farm in the Missouri Ozarks with my husband and my two

> daughters, na, who is 5 and on the spectrum, and Morrigan, who is 2

and

> NT. Morrigan had a reaction to her shots at 4 months, seized and passed

out

> within 30 seconds. The nurse that gave them to her flatly denied the

> reaction and even said " I have given hundreds of shots and have *never*

seen

> a reaction. " (so that meant mine couldn't even be that rare one they talk

> about in their crappy literature). When I started doing research on the

net

> about shot reactions I found much more info than I had anticipated, namely

> what had been going on with my older daughter, na. na had not

had

> the immediate reaction that Morrigan had had, but had been having

reactions

> none the less, with each round of shots making her steadily worse. I feel

> horrible knowing (now) that I had poisoned my own daughter, and very

> thankful I had not killed her, which is probably what would have happened

on

> her next round. Morrigan saved her sister's life. na has had a few

> diagnoses', the first was PPD-NOS at 3 yrs. old, at that time we were told

> she would never be able to take care of herself. The next, at 3 1/2 yrs.,

> was just Autism, and with training she would be able to take care of

> herself. The next one, at 4 yrs., was HFA with language issues. Mind you,

I

> didn't ask for all of these, but every new doc had to re-diagnose her as

> though I didn't know she was autistic. The last one really infuriated me,

4

> 1/2 yrs., Autistic, we were referred to him *because* she was autistic NOT

> because we needed yet another diagnoses. She had a real illness that

needed

> to be dealt with that he was blowing off because she was autistic, the

> have NO problem walking out of doctors offices, I have gone as far as

> destroying the file in front of them before I do.

>

> I still have not found a local (within 1 1/2 hours drive) doc for my girls

> after a year here. I do however have an appointment with a DAN doc in

> Arkansas the 21st of Dec. I called a few, and besides the drive to

on

> AR is a little less than half the drive to KC or St. Louis, the

receptionist

> seemed to know more and care more about autism than most docs I have had

the

> misfortune of seeing. na steadily gets better on her own, she has,

> thankfully, not many health issues. After a lot of research I *am* sure

she

> is mercury toxic. I have also discovered that I am mercury toxic also, and

I

> have a mouthful of amalgam, but that wasn't what did it. Other than not

> having language delay, I was a textbook case autistic as a child. I was

> never diagnosed, my odd behavior was explained away... I toe walked

because

> I wanted to be a ballerina was one. The first time I heard my mom say that

I

> didn't know what a ballerina was, but she was Mom, she must be right.

There

> was more, but I won't get into it, this is long enough.

>

> I want to thank you all for your stories and your questions, I won't have

to

> ask as many and I don't feel as I am the only one trying to help my child

> get better.

>

> Tana

>

> " All truth goes through three stages. First it is ridiculed. Then it is

> violently opposed. Finally, it is accepted as self-evident. "

(Schoepenhouer)

>

December 10, 2001

Tana,

I'm also originally from the show-me state. There's a book called " Pretending

to Be Normal " available through Future Horizons by a woman w/ Asperger's who

didn't have a diagnosis for herself until she had a daughter w/ AS. Last night

at the bookstore I overheard a woman ask about books on ASD. Of course I spoke

up. Turns out she's 50 and just got a diagnosis after doing some research on

the subject because her grandson just got diagnosed!

I e-mailed her my list of 20 or so good books on the subject.

S

On Mon, 10 December 2001, " Rita Shreffler " wrote:

>

> <html><body>

>

> <tt>

> Hi Tana,

>

> Welcome to the list. & nbsp; This has been such a wonderful source of

information

> for me--I hope you get as much out of it as I do.

>

> I live in Springfield, MO and we have a wonderful pediatrician. & nbsp;

She's

> fairly new in town--we only found out about her a few months ago and

> switched over. & nbsp; She is doing a great job in overseeing chelation for both

of

> our ASD kids. You didn't mention where in the Ozarks you are but you can't

> be too far away--I'd love to hear from you! & nbsp; Please email me at

> rfcshreffler@....

>

> Best wishes,

> Rita Shreffler

>

> [ ] Intro

>

> & gt; Hi,

> & gt; I have been lurking for a couple of weeks to get to know everybody and

to

> & gt; see if I was in the right place. I believe I am.

> & gt;

> & gt; I live on a small farm in the Missouri Ozarks with my husband and my

two

> & gt; daughters, na, who is 5 and on the spectrum, and Morrigan, who is

2

> and

> & gt; NT. Morrigan had a reaction to her shots at 4 months, seized and

passed

> out

> & gt; within 30 seconds. The nurse that gave them to her flatly denied the

> & gt; reaction and even said & quot;I have given hundreds of shots and have

*never*

> seen

> & gt; a reaction. & quot; (so that meant mine couldn't even be that rare one they

talk

> & gt; about in their crappy literature). When I started doing research on

the

> net

> & gt; about shot reactions I found much more info than I had anticipated,

namely

> & gt; what had been going on with my older daughter, na. na had

not

> had

> & gt; the immediate reaction that Morrigan had had, but had been having

> reactions

> & gt; none the less, with each round of shots making her steadily worse. I

feel

> & gt; horrible knowing (now) that I had poisoned my own daughter, and very

> & gt; thankful I had not killed her, which is probably what would have

happened

> on

> & gt; her next round. Morrigan saved her sister's life. na has had a

few

> & gt; diagnoses', the first was PPD-NOS at 3 yrs. old, at that time we were

told

> & gt; she would never be able to take care of herself. The next, at 3 1/2

yrs.,

> & gt; was just Autism, and with training she would be able to take care of

> & gt; herself. The next one, at 4 yrs., was HFA with language issues. Mind

you,

> I

> & gt; didn't ask for all of these, but every new doc had to re-diagnose her

as

> & gt; though I didn't know she was autistic. The last one really infuriated

me,

> 4

> & gt; 1/2 yrs., Autistic, we were referred to him *because* she was autistic

NOT

> & gt; because we needed yet another diagnoses. She had a real illness that

> needed

> & gt; to be dealt with that he was blowing off because she was autistic,

the

> next

> & gt; doc did the same thing, she even said & quot;She is autistic, that's

normal. & quot; I

> & gt; have NO problem walking out of doctors offices, I have gone as far as

> & gt; destroying the file in front of them before I do.

> & gt;

> & gt; I still have not found a local (within 1 1/2 hours drive) doc for my

girls

> & gt; after a year here. I do however have an appointment with a DAN doc in

> & gt; Arkansas the 21st of Dec. I called a few, and besides the drive to

> on

> & gt; AR is a little less than half the drive to KC or St. Louis, the

> receptionist

> & gt; seemed to know more and care more about autism than most docs I have

had

> the

> & gt; misfortune of seeing. na steadily gets better on her own, she

has,

> & gt; thankfully, not many health issues. After a lot of research I *am*

sure

> she

> & gt; is mercury toxic. I have also discovered that I am mercury toxic also,

and

> I

> & gt; have a mouthful of amalgam, but that wasn't what did it. Other than

not

> & gt; having language delay, I was a textbook case autistic as a child. I

was

> & gt; never diagnosed, my odd behavior was explained away... I toe walked

> because

> & gt; I wanted to be a ballerina was one. The first time I heard my mom say

that

> I

> & gt; didn't know what a ballerina was, but she was Mom, she must be right.

> There

> & gt; was more, but I won't get into it, this is long enough.

> & gt;

> & gt; I want to thank you all for your stories and your questions, I won't

have

> to

> & gt; ask as many and I don't feel as I am the only one trying to help my

child

> & gt; get better.

> & gt;

> & gt; Tana

> & gt;

> & gt; & quot;All truth goes through three stages. First it is ridiculed. Then it

is

> & gt; violently opposed. Finally, it is accepted as self-evident. & quot;

> (Schoepenhouer)

> & gt;

> & gt;

December 13, 2001

I

> have NO problem walking out of doctors offices, I have gone as far

as

> destroying the file in front of them before I do.

>

Wow! You are SPUNKY! (And your kids are so lucky to have you as

their mom!!!)

Welcome to the group Tana! I have a five year old daughter diagnosed

with PDD-NOS at 3.5. She is now 5.5, and we started chelating this

fall (DMSA and ALA). We had to stop for a little while because her

yeast/fungal GI problems got out of control (she was acting so

different that I was worried that more metal had gotten into her

brain than out of her brain, so I was relieved that it was " just " her

gut). After treating the gut, we resumed chelating, this time only

with DMSA to give her gut a break. (Plus I was tired of dealing with

the food issues and wanted her gut to heal!)

> I still have not found a local (within 1 1/2 hours drive) doc for

my girls

> after a year here. I do however have an appointment with a DAN doc

in

> Arkansas the 21st of Dec. I called a few, and besides the drive to

on

> AR is a little less than half the drive to KC or St. Louis, the

receptionist

> seemed to know more and care more about autism than most docs I

have had the

> misfortune of seeing.

I'm happy that you have an appointment, and so soon!

> na steadily gets better on her own,

Glad to hear that about na. How is your little one, any lasting

side effects from the vaccine reaction?

(BTW, you can report vaccine reactions yourself, don't count on your

doctor's office doing it. Other people on this board would know how.)

Carolyn

December 13, 2001

-----Original Message-----

From: crdb4532 [mailto:car4532@...]

I

> have NO problem walking out of doctors offices, I have gone as far

as

> destroying the file in front of them before I do.

>

Wow! You are SPUNKY! (And your kids are so lucky to have you as

their mom!!!)

I'm not so sure it is spunk, I think it is called anger.

Welcome to the group Tana!

Thanks, I am learning a great deal.

How is your little one, any lasting side effects from the vaccine reaction?

She had seizures, small ones, that lasted for a couple of months, steadily

diminishing until she didn't have them anymore. She does have some " things "

that at this point it is hard to tell if she has a problem or is just 2 yrs

old and discovering boundaries. She also, like any younger sibling, thinks

her big sister is the greatest thing in the world and copies some of

na's behavior, but it is kind of obvious that that is what she is

doing.

Tana

" All truth goes through three stages. First it is ridiculed. Then it is

violently opposed. Finally, it is accepted as self-evident. " (Schoepenhouer)

=======================================================

October 30, 2002

Welcome and good luck you'll learn lot's on this list!!! There are lot's of

caring and helpful people! Sharon

October 30, 2002

P.Welcome to the list. The list FAQs are a good place to start. Have you

had a DDI hair analysis done for your son? Did he have reactions/regression to

specific vaccines or do you suspect other exposure? SFrom: mefloridiot1 [mailto:

mefloridiot@...] @...: Wed, 30 Oct 2002

17:50:03 -0000Subject: [ ] IntroDear list members,I am new to the

group as of yesterday. I have a 3yo son with PDD who has been gf/cf/sf/ef/nut

free and low phenol for 6 months. We are about to start chelation and thought

it would be a good idea to join you to learn as much as I could to help guied us

along our jouney. Thank you, P. (Teddy's mommy)

September 18, 2005

Hi JoAnn welcome well i know what you mean i have been in pain

sence i was 15 and the only time i have releif is when i was pregnant

with my two kids i loved that time but i hated right after i had my

daughter because i could not walk hardly good luck with the rummy and

i have no idea about what you can take for the pain that would be fine

while you are nursing.

melissa

September 18, 2005

Welcome JoAnn,

I am so glad your here, but sorry how you feel. Your family has had

it's share of RA. I hope you can get to the rheumy soon, I know it's

hard living with pain. Hugs, Tawny

> Hi, I'm JoAnn, and I just joined this list. I am experiencing what I

> think must be RA, or something related. I have had aches/pains for

> over a decade, but tests have never shown anything conclusive.

> However, I have a strong family history of RA, among other problems,

> and I'm going in for more tests soon. My dad has had RA for about

40+

> years now, and has had most of his joints replaced, his ankles are

> fused, you name it. He now suffers from severe sciatica, and is

> more disabled than he ever was, darn it. He's 77 years old, and I

> admire him so much for staying active for SO long, despite his pain

> (which he's had all MY life, since I'll be 40 in November).

>

> My sister is now going on disability w/her RA; she's 48 and

suffering

> terribly. She is on methotrexate and prednisone, I think. Dad has

been

> on everything over the years, and is currently on methotrexate and

> Enbrel.

>

> My concerns are, of course, that the tests will show nothing, as

> usual. I am having horrible stiffness/pain in my right shoulder,

down

> my arm, elbow, into my wrists on both sides....Ankles, knees, hips

> hurt, too. No real swelling, although I have hot joints. But the

worst

> thing right now, other than pain, is that I'm exhausted and

weak.

> I " look " fine, so no one gets it. My husband is sympathetic, and

> believes me when I'm struggling w/the weakness.

>

> I am also the mother of six children, ages 22 months through 15

years.

> Only my oldest is in school; the others homeschool. That's going

okay,

> despite my pains. It actually helps for me NOT to have to run all

over

> from one school to another, if you know what I mean. I've had them

in

> school before, and I found that more difficult to manage. We also

have

> special needs; I have a couple of kids on the autistic spectrum, as

> well as dealing with sensory integration disorder and speech delay

> w/my youngest....Whew. He recently qualified for OT and speech

therapy

> in our home, thank GOD. That will help (less running around to

> appointments).

>

> Anyway, I joined this list hoping to learn more from you, and to

learn

> how to give myself what I need. I am used to putting myself last,

and

> I see now that I cannot do that! I won't be of any use to my kids

if I

> can't manage this more effectively.

>

> I am not taking anything at this point, but I hope to get in to the

> rheumatologist this week for tests. I can't take Motrin at all; it

> wrecks my stomach. I thought I had Crohn's disease last year after

> taking Motrin (after I tore 3 ligaments in my right ankle, missing

the

> last couple of steps while carrying down a full laundry basket,

ouch).

> I am still suffering from whatever happened to my stomach/colon at

> that point, but the stomach pains are gone. (My mom died from

> complications of Crohn's disease 9 years ago, when she was just 59

> years old.) I don't know if Tylenol would help w/the pain. I am

still

> nursing my youngest, and don't think he'll wean for at least 6

months.

> I know there must be some drugs compatible w/nursing; anyone know

what

> might be a possibility?

>

> Thanks for being here!

> JoAnn

September 19, 2005

Hi Joann

Welcome to the group. I am new here too.

I hope you get some positive results when you go to see your rheumy and he will

be able to help you with your pain.

Joyce

tdianaok <tdianaok@...> wrote:

Welcome JoAnn,

I am so glad your here, but sorry how you feel. Your family has had

it's share of RA. I hope you can get to the rheumy soon, I know it's

hard living with pain. Hugs, Tawny

> Hi, I'm JoAnn, and I just joined this list. I am experiencing what I

> think must be RA, or something related. I have had aches/pains for

> over a decade, but tests have never shown anything conclusive.

> However, I have a strong family history of RA, among other problems,

> and I'm going in for more tests soon. My dad has had RA for about

40+

> years now, and has had most of his joints replaced, his ankles are

> fused, you name it. He now suffers from severe sciatica, and is

> more disabled than he ever was, darn it. He's 77 years old, and I

> admire him so much for staying active for SO long, despite his pain

> (which he's had all MY life, since I'll be 40 in November).

>

> My sister is now going on disability w/her RA; she's 48 and

suffering

> terribly. She is on methotrexate and prednisone, I think. Dad has

been

> on everything over the years, and is currently on methotrexate and

> Enbrel.

>

> My concerns are, of course, that the tests will show nothing, as

> usual. I am having horrible stiffness/pain in my right shoulder,

down

> my arm, elbow, into my wrists on both sides....Ankles, knees, hips

> hurt, too. No real swelling, although I have hot joints. But the

worst

> thing right now, other than pain, is that I'm exhausted and

weak.

> I " look " fine, so no one gets it. My husband is sympathetic, and

> believes me when I'm struggling w/the weakness.

>

> I am also the mother of six children, ages 22 months through 15

years.

> Only my oldest is in school; the others homeschool. That's going

okay,

> despite my pains. It actually helps for me NOT to have to run all

over

> from one school to another, if you know what I mean. I've had them

in

> school before, and I found that more difficult to manage. We also

have

> special needs; I have a couple of kids on the autistic spectrum, as

> well as dealing with sensory integration disorder and speech delay

> w/my youngest....Whew. He recently qualified for OT and speech

therapy

> in our home, thank GOD. That will help (less running around to

> appointments).

>

> Anyway, I joined this list hoping to learn more from you, and to

learn

> how to give myself what I need. I am used to putting myself last,

and

> I see now that I cannot do that! I won't be of any use to my kids

if I

> can't manage this more effectively.

>

> I am not taking anything at this point, but I hope to get in to the

> rheumatologist this week for tests. I can't take Motrin at all; it

> wrecks my stomach. I thought I had Crohn's disease last year after

> taking Motrin (after I tore 3 ligaments in my right ankle, missing

the

> last couple of steps while carrying down a full laundry basket,

ouch).

> I am still suffering from whatever happened to my stomach/colon at

> that point, but the stomach pains are gone. (My mom died from

> complications of Crohn's disease 9 years ago, when she was just 59

> years old.) I don't know if Tylenol would help w/the pain. I am

still

> nursing my youngest, and don't think he'll wean for at least 6

months.

> I know there must be some drugs compatible w/nursing; anyone know

what

> might be a possibility?

>

> Thanks for being here!

> JoAnn

September 21, 2005

JoAnn,

Welcome to the group. I know you will learn a lot from

everyone here. They are really great. I hope you feel

better soon.

Beth(AR)

--- JoAnn <mamalac@...> wrote:

> Hi, I'm JoAnn, and I just joined this list. I am

> experiencing what I

> think must be RA, or something related. I have had

> aches/pains for

> over a decade, but tests have never shown anything

> conclusive.

> However, I have a strong family history of RA, among

> other problems,

> and I'm going in for more tests soon. My dad has had

> RA for about 40+

> years now, and has had most of his joints replaced,

> his ankles are

> fused, you name it. He now suffers from severe

> sciatica, and is

> more disabled than he ever was, darn it. He's 77

> years old, and I

> admire him so much for staying active for SO long,

> despite his pain

> (which he's had all MY life, since I'll be 40 in

> November).

>

> My sister is now going on disability w/her RA; she's

> 48 and suffering

> terribly. She is on methotrexate and prednisone, I

> think. Dad has been

> on everything over the years, and is currently on

> methotrexate and

> Enbrel.

>

> My concerns are, of course, that the tests will show

> nothing, as

> usual. I am having horrible stiffness/pain in my

> right shoulder, down

> my arm, elbow, into my wrists on both

> sides....Ankles, knees, hips

> hurt, too. No real swelling, although I have hot

> joints. But the worst

> thing right now, other than pain, is that I'm

> exhausted and weak.

> I " look " fine, so no one gets it. My husband is

> sympathetic, and

> believes me when I'm struggling w/the weakness.

>

> I am also the mother of six children, ages 22 months

> through 15 years.

> Only my oldest is in school; the others homeschool.

> That's going okay,

> despite my pains. It actually helps for me NOT to

> have to run all over

> from one school to another, if you know what I mean.

> I've had them in

> school before, and I found that more difficult to

> manage. We also have

> special needs; I have a couple of kids on the

> autistic spectrum, as

> well as dealing with sensory integration disorder

> and speech delay

> w/my youngest....Whew. He recently qualified for OT

> and speech therapy

> in our home, thank GOD. That will help (less running

> around to

> appointments).

>

> Anyway, I joined this list hoping to learn more from

> you, and to learn

> how to give myself what I need. I am used to putting

> myself last, and

> I see now that I cannot do that! I won't be of any

> use to my kids if I

> can't manage this more effectively.

>

> I am not taking anything at this point, but I hope

> to get in to the

> rheumatologist this week for tests. I can't take

> Motrin at all; it

> wrecks my stomach. I thought I had Crohn's disease

> last year after

> taking Motrin (after I tore 3 ligaments in my right

> ankle, missing the

> last couple of steps while carrying down a full

> laundry basket, ouch).

> I am still suffering from whatever happened to my

> stomach/colon at

> that point, but the stomach pains are gone. (My mom

> died from

> complications of Crohn's disease 9 years ago, when

> she was just 59

> years old.) I don't know if Tylenol would help w/the

> pain. I am still

> nursing my youngest, and don't think he'll wean for

> at least 6 months.

> I know there must be some drugs compatible

> w/nursing; anyone know what

> might be a possibility?

>

> Thanks for being here!

> JoAnn

>

__________________________________________________

January 12, 2006

I also cannot take nsaids due to kidney reaction to them, I have been looking

for alternatives myself. Right now I am taking predisone, until my next rheumy

apt in February, then the doc said we will talk;k about it. I do take humiria,

but needs something else. I was taking mobic but no more, in WI

andgretta2 <andgretta2@...> wrote: I am 62, female, retired with

Polymyalgia Rheumatica and

Fibromyalgia. The combination forced me to retire as I could not

cope.

I have had a gastric by-pass surgery and can not take NASIDs to reduce

inflammation and pain. Use Tylenol, Soma and Zoloft and much of the

time it helps but right now I have days when I want to cry. I have

deep tissue massage every 2 to 3 weeks and try to stretch.

Does any one have suggestions?

Gretta

January 13, 2006

>

> I am 62, female, retired with Polymyalgia Rheumatica and

> Fibromyalgia. The combination forced me to retire as I could not

> cope.

> I have had a gastric by-pass surgery and can not take NASIDs to reduce

> inflammation and pain. Use Tylenol, Soma and Zoloft and much of the

> time it helps but right now I have days when I want to cry. I have

> deep tissue massage every 2 to 3 weeks and try to stretch.

> Does any one have suggestions?

>

> Gretta

>

HI GRETA--WELL THE GOOD NEWS IS THE POLYMYALGIA CAN GO AWAY ---THE FIBRO IT

DOESNT!!!I TO GO FOR MASSAGE-BUT MY MASSUSE TOLD ME DEEP TISSUE MASSAGE IS NOT

GOOD FOR FIBRO PEOPLE--SHE HAS IT HERSELF--I GET A NICE COMFORTABLE MASSAGE-

MORE SOOTHING---GASTRIC BYPASS SURGERY??HOW LONG AGO??LOST ALOT OF WEIGHT?? I

HAVE CONSIDERED IT MYSELF BUT JUST WOULDN'T RISK IT BEING IN SUCH POOR HEALTH

RIGHT NOW.I TOO AM RETIRED -A NURSE- AT 43 I HAD TO STOP WORKING CAUSE I

COULDNT COPE WITH THE PAIN EITHER--KEEP IN TOUCH..LYNN8953

March 13, 2006

HI ,

Introducing too many food changes at once can be in-effective. Pick one thing

and stick with it for say a month. Let everyone get used to it and then make

another change. This could make it easier on everyone especially you since you

are preparing the meals. Now choosing the one thing could be challenging but it

is a good place to start. Sugar and other food additives tend to de-senstitize

the taste buds and from what I have read are addictive. There are so many

factors in determining where to make changes. Look at what the family is eating

now; boxed and prepared foods, fast food and how many times per day, vending

machine foods. These are the hardest to change because of the convenience. If

you are already preparing from scratch then begin to look at the quality of the

foods you are using. I did find organic was expensive in the grocery store but

after I found the local WAPF chapter I found several local sources for high

quality foods and it was less expensive. You

may find that one breakfst or supper a few times per week would work best for

the new change. any change you make is going to make a difference. Best of

luck.

________________________________________________________________________

Message: 4

Date: Sun, 12 Mar 2006 13:36:44 -0000

From: " "

Subject: Intro

Hello, I just found this group and I am looking forward to learning

some new cooking techniques/recipes etc.

I first learned about nourishing traditions/Weston Price last year,

and I tried the raw milk, raw butter, and kefir. Well, my hubby told

me to never again get milk or butter there. The kefir--well I

couldn't bring myself to have any of that. Well that farm has since

moved to NY, so I'm still looking for some good eggs locally.

The two biggest challenges I have are getting my family to try this

new way of eating and finding local suppliers to get the things. Of

course, being a lousy cook doesn't help my case. lol

I made some really good chicken stock from the recipe in Sally's

book, and that is about it. All the good resources seem to be in the

big cities. I found a lady that does cooking classes and has monthly

dinners she is in the San Francisco area. She has a book just out it

sounds really good. FullMoonFeasts. I am looking for recipes that

would be kid friendly. My kids are into junk food and don't really

like to try new things.

Do any of you know of a food co-op in the northeast? I found

northeast coop, but the website does not come up. Maybe someone

would start something like that around here. Hope to find some like

minded people on here to share ideas.

Blessings,

March 13, 2006

Hello and thanks for the support. Yes the processed foods are addictive and

too convenient. Doesn't help that hubby is a Schwan's man. lol Look forward

to chatting with you in the group.

-- re:Intro

HI ,

Introducing too many food changes at once can be in-effective. Pick one

thing and stick with it for say a month. Let everyone get used to it and

then make another change. This could make it easier on everyone especially

you since you are preparing the meals. Now choosing the one thing could be

challenging but it is a good place to start. Sugar and other food additives

tend to de-senstitize the taste buds and from what I have read are

addictive. There are so many factors in determining where to make changes.

Look at what the family is eating now; boxed and prepared foods, fast food

and how many times per day, vending machine foods. These are the hardest to

change because of the convenience. If you are already preparing from

scratch then begin to look at the quality of the foods you are using. I did

find organic was expensive in the grocery store but after I found the local

WAPF chapter I found several local sources for high quality foods and it was

less expensive. You

may find that one breakfst or supper a few times per week would work best

for the new change. any change you make is going to make a difference.

Best of luck.

February 4, 2007

--- In , " kelley smith " <kelley1206@...>

wrote:

>

> hi! my name is kelley s and i'm in sw louisiana. i'm 37, married

> with 2 toddler girls.

>

> i have adult juvie rheum arthritis, fibromyalgia and have had a

> stress fracture on my hip thanks to the r.a.

>

> joined today b/c the weather has been so terrible down here - damp

> and chilly (by our standards-lol) and i was starting to get angry

> with God. figured i needed some place where people would

understand.

>

> hubby drives me nuts when he says he back hurts or his neck - i

want

> to say " you don't know what pain is! " but somehow manage to

restrain

> myself - lol.

>

> oh well, thats me... most days i am good natured about it. my mom

> has lupus, etc and she taught me that you just have do what you

have

> to do. you'll always have pain and fatigue so you just have to get

> up and keep going.

>

> anyway, thanks for listening,

>

> sincerely,

> kelley s

Hi Kelley -

I'm in SW Lousiana also - Lafayette. I agree about the weather.

Sure makes things worse. We'll just have yo look forward to August!

Lea

>

February 6, 2007

Welcome, Kelley!

Not an MD

[ ] intro

> hi! my name is kelley s and i'm in sw louisiana. i'm 37, married

> with 2 toddler girls.

>

> i have adult juvie rheum arthritis, fibromyalgia and have had a

> stress fracture on my hip thanks to the r.a.

>

> joined today b/c the weather has been so terrible down here - damp

> and chilly (by our standards-lol) and i was starting to get angry

> with God. figured i needed some place where people would understand.

>

> hubby drives me nuts when he says he back hurts or his neck - i want

> to say " you don't know what pain is! " but somehow manage to restrain

> myself - lol.

>

> oh well, thats me... most days i am good natured about it. my mom

> has lupus, etc and she taught me that you just have do what you have

> to do. you'll always have pain and fatigue so you just have to get

> up and keep going.

>

> anyway, thanks for listening,

>

> sincerely,

> kelley s

May 5, 2007

Hi,

I'm new here and have a kid who's waiting to be evaluated for autism.

We're already into Nourishing Traditions. I am interested in learning

more about diet and autism. My kid has been making steady progress

after ditching refined and processed foods and especially after getting

rid of MSG in all it's nasty forms from our diet. I can't believe

there aren't laws against having a neurotoxin in unlimited quantities

allowed in foods for human or animal consumption.

Rita

November 9, 2007

Hi Gloria,

I also have trouble with some of the people in my family not

understanding that sometimes you just can't do it. I have not gotten all of them

to understand that I am sick at all. You know it's the old well you don't look

sick. What I did was to explain it with some visual aids like the pamplets that

are at the doctors office and a bunch of stuff from the web. That way you can

show them what is happining to your joints. I also had an artical about the

problems that this desease causes for your organs. From there if they didn't

understand I just quit trying. Not all people will get it. I just limit my time

around these people when I am not feeling up to it. I hope this helps you. Have

a less pain day. Betty in Mi.

glokay20022002 <glokay20022002@...> wrote:

Hi everyone,

I am Gloria from Ok. I have been diagnosed with ra since 04. I have also

been diagnosed with sjogren's, diabetes, degenerative spine disease,

osteoporosis, oa, and the most recent...fibromyalgia. I need some ideas

on how to explain to my family just how depilating this disease is. They

pretty much have no idea.

One of my daughters has a 1 year old and wanted me to keep her for a few

days while she was away on a business trip, and when I told her that I

couldn't, she wouldn't speak to me for awhile. When I try to mention my

illness to her she always blames it on me, and by that I mean that she

tells me that I need to eat healthier, get lots of excersise and take

lots of vitamins. Yeah right!!lol

Anyway, I am glad that I found this sight because the other group that I

belonged to kinda fizzled out.

Thank you all for giving me a place to whine.

Gentle hugs from ok,

gloria

November 9, 2007

Welcome to the group, Gloria! Hope you like it here.

I'm sorry your family doesn't understand. That's all too common.

A lot of members have found this site and the " spoon theory " helpful:

http://www.butyoudontlooksick.com/

http://www.butyoudontlooksick.com/the_spoon_theory/

Not an MD

[ ] intro

>

> Hi everyone,

>

> I am Gloria from Ok. I have been diagnosed with ra since 04. I have also

> been diagnosed with sjogren's, diabetes, degenerative spine disease,

> osteoporosis, oa, and the most recent...fibromyalgia. I need some ideas

> on how to explain to my family just how depilating this disease is. They

> pretty much have no idea.

>

> One of my daughters has a 1 year old and wanted me to keep her for a few

> days while she was away on a business trip, and when I told her that I

> couldn't, she wouldn't speak to me for awhile. When I try to mention my

> illness to her she always blames it on me, and by that I mean that she

> tells me that I need to eat healthier, get lots of excersise and take

> lots of vitamins. Yeah right!!lol

>

> Anyway, I am glad that I found this sight because the other group that I

> belonged to kinda fizzled out.

>

> Thank you all for giving me a place to whine.

>

> Gentle hugs from ok,

>

> gloria

>

November 9, 2007

Hi Gloria,

I have two teenagers and they sound a little like your daughter. They think

because I

am don't look horrible I am not sick or feeling badly. I like the site

sent thru, I would

show your daughter that story.

Welcome to the group.

Joy

glokay20022002 <glokay20022002@...> wrote:

Hi everyone,

I am Gloria from Ok. I have been diagnosed with ra since 04. I have also

been diagnosed with sjogren's, diabetes, degenerative spine disease,

osteoporosis, oa, and the most recent...fibromyalgia. I need some ideas

on how to explain to my family just how depilating this disease is. They

pretty much have no idea.

One of my daughters has a 1 year old and wanted me to keep her for a few

days while she was away on a business trip, and when I told her that I

couldn't, she wouldn't speak to me for awhile. When I try to mention my

illness to her she always blames it on me, and by that I mean that she

tells me that I need to eat healthier, get lots of excersise and take

lots of vitamins. Yeah right!!lol

Anyway, I am glad that I found this sight because the other group that I

belonged to kinda fizzled out.

Thank you all for giving me a place to whine.

Gentle hugs from ok,

gloria

December 4, 2007

Hi Jim!

I'm from Michigan! I'm 35 now and was

diagnosed with CFS at the age of 19, and Fibromyalgia

at the age of 30 (symptoms began 2 years sooner but

took a bit of time to be sent to a doctor that could

diagnose it). I am now being treated for inflammatory

arthritis. Welcome to the group! This has been an

invaluable place of comfort, support, and a wealth of

information!!

Keeping you in my prayers

--- Gramps <jimkielma@...> wrote:

> Hello, My name is Jim Kielma and I just joined the

> group. Have had RA and Chronic Fatigue syndrome for

> 2 years. Also suffered a couple strokes last year.

> Glad to be part of this group.

>

> Gramps

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with

> Mobile. Try it now.

>

> [Non-text portions of this message have been

> removed]

>

________________________________________________________________________________\

____

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February 18, 2008

--

Hi Tricia it's nice to meet you. Welcome.....I'm new here too!

Clare

- In , " Tricia " <pfeifferdcat@...> wrote:

>

> Hi Everyone,

> I am new to this group & am looking forward to participating. I was

> diagnosed about 6 months ago. I am 37. Prior to that, I think I had RA

> about 6-7 years ago (pain in hands & feet, but nothing that stopped me

> from doing anything). I was going to go see a Rheumatologist, but I

> got pregnant w/ my daughter & the pain went away, until about a year

> or 2 after I had my son. I am currently on Methotrexate, 6 pills

> once/week. They were great (all the pain & swelling was gone) until

> about 1 1/2 months ago. The pain & swelling in my hand has come back.

> I live in So Cal. Has anyone else here noticed that because of the

> weather? I go to the Dr next week, so we'll see if he increases my

> dose or what.

> Also, do any of you use anything topical for the pain & swelling?

> Thanks,

> Tricia

>

February 21, 2008

, Hang in there. Life will get better. Gettinng a diagnosis like RA

is hard to accept and deal with esp. when you are tired and hurting. My initial

flair was by far the worst one I have had since being diagnosed 5 years ago. If

you are not seeing a rheumatologist set up an appointment as soon as you can.

Also you may want to ask for a prescription for some type of steriod

(prednisone, medrol, decadron, etc) for short term use to get you over the

initial flair until the plaquinal has time to start working. After being

diagnosed we all go thru stages of fear, denial, and sadness. Time and the

right combination of meds will help you get to feeling better and help you to

cope with RA. You may have to make some changes in lifestyle to get the rest

you need but you should be able to get back to a full and active life. This is

great place to get info and there are a lot of other web sites too. Learn as

much as you can about the disease, be informed and be

proactive in getting the best care you can. Many of us still lead full and

active lives and have learned to deal with RA. I have to take things a little

slower than I once did but I am also somewhat older than you and still keep up

and can outwork most of my friends my age. I work parttime and keep my

grandchild 2-3 days a week, travel with my husband when the opportunity comes

up, and am active at church. I guess what I am trying to impart is that life

may have to change some but it still can be very full and rewarding. There are

better days ahead.

veronica <veronica1528@...> wrote: Hi my name is and

I am 35 yrs old and it's been 2 weeks

today that I was diagnosed w/RA. I'm in ALOT of pain and feeling

really mad that I have this disease. I have 2 young active children

(5 & 8) and hate the fact that I am ALWAYS tired and hurting. Being

a full time mother, we are not allowed to have DAYS OFF. I have a

busy life and I feel so frustrated that I can't accomplish as much

anymore. I work part time, go to school, volunteer @ my childrens

school, and a single parent during the week, and have all the house

cleaning and duties to do.

I'm just so emotional right now and feel like a big part of me has

been taken away. The big part being my health.

I'm trying not to show it in front of my family, and hate complaining

and whining about it to them because they don't understand and I'm

sure they get tired of hearing me complain.

That's why I joined this support group, I need to vent and read about

other people in the same situation.

I am currently on Plaquenil and ibuprofen 800mg and feel absolutely

NO RELIEF!!!!! I am in tons of pain and all I can do is wait until

the kids go to bed so I can relief some stress by crying.

I'm hoping to get some support from someone who understands this pain.

Any advice or kind words are always welcomed.

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

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February 21, 2008

--

Hi nice to meet you! I know how you feel. When I told I had

RA I was up-set. The thought of having to see a DR. all the time

wasn't a fun thought! I'm healthy.....but for this darn RA. I have a

DR. appt. in April and my DR. said that he will take a scan of my

wrist again. If there's some deterioration in my wrist,he's going to

put me on either Enbrel or Humira. So I'm not looking forword to that!

Best wishes to you!

Clare

- In , " veronica " <veronica1528@...> wrote:

>

> Hi my name is and I am 35 yrs old and it's been 2 weeks

> today that I was diagnosed w/RA. I'm in ALOT of pain and feeling

> really mad that I have this disease. I have 2 young active children

> (5 & 8) and hate the fact that I am ALWAYS tired and hurting. Being

> a full time mother, we are not allowed to have DAYS OFF. I have a

> busy life and I feel so frustrated that I can't accomplish as much

> anymore. I work part time, go to school, volunteer @ my childrens

> school, and a single parent during the week, and have all the house

> cleaning and duties to do.

> I'm just so emotional right now and feel like a big part of me has

> been taken away. The big part being my health.

> I'm trying not to show it in front of my family, and hate complaining

> and whining about it to them because they don't understand and I'm

> sure they get tired of hearing me complain.

> That's why I joined this support group, I need to vent and read about

> other people in the same situation.

> I am currently on Plaquenil and ibuprofen 800mg and feel absolutely

> NO RELIEF!!!!! I am in tons of pain and all I can do is wait until

> the kids go to bed so I can relief some stress by crying.

> I'm hoping to get some support from someone who understands this pain.

>

> Any advice or kind words are always welcomed.

>

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