new member intro

[Guest guest]

> I want to have tested for all sort of metals, etc-- that's

what i

> need to find out. I know I need his lead level tests- and what

else?

A " hair element profile " from Doctors Data www.doctorsdata.com is a

good screening test for many elements. The 'counting rules' in the

files section discusses how to use it for mercury.

If you live in NY state you may have to go to CT to get it ordered.

Andy

q

cw

ew

we

we

[Guest guest]

Hi Andy I have a question. I live in New York and want to give my 5 year old

a Hair Element Profile test, now how would I go about getting that for him

without a doctor doing it and without going out of state?

Can I just order the test and do it on my own?

Thanks Vicki

[Guest guest]

At 02:58 AM 3/29/2002 EST, you wrote:

>Hi Andy I have a question. I live in New York and want to give my 5 year old

>a Hair Element Profile test, now how would I go about getting that for him

>without a doctor doing it and without going out of state?

>Can I just order the test and do it on my own?

>Thanks Vicki

Dear Vicki, please read these 2 files, then ask questions:

/files/HOW_TO_hair_test

/files/Counting%2BRules

I believe there is some special consideration about NY but I don't

recall the details. No doubt info should be added to the files...

Moria

[Guest guest]

Hi ,

>I'm new on the list- looking for info, insite and support. I just found out

>a week ago my 2 and a half year old son may be autistic/pdd. He had his

>speech and OT tested, and i'm in the process of calling around trying to get

>him seen by a real doctor to find out for sure. The waiting list here at

>Stony Brook University Hospital is 6 months.

>Does anyone have advice- kinda " if i knew then what i know now " sort of

>stuff? I have about 2-3 years experience working with autistic kids in

>Virginia- as an aide, therapist and babysitter.

Well, I left this post alone for a few days, and I don't think you got many

answers.... hummm..... so I will answer. I will start with the caveats on

my answer first, in hopes that I will not get seriously flamed.....

CAVEAT: I am not a parent. Zero kids. No NT kids, no ASD kids. none.

I therefore AM NOT ABLE to answer from the perspective of " if I knew

then what I know now " . You have been warned

I will answer from my own perspective, which is influenced by reading

this list for --um-- about 1.5 years. Also read some other lists

relating to autism. I have also been chelating mySELF (for mercury

toxicity) for 15 months. Here is my advice:

1. be prepared to " hear and ignore " or " hear and delete from memory "

a range of very bleak statements from medical people. These include

that autism is genetic, incurable, that there is little or nothing

you can do etc. Actually, you have no doubt already heard this stuff

in great detail due to your work background.

Many or most doctors are not knowledegable about the positive

results of biomedical interventions. If you take this as a given,

it may make the situation ONLY " extremely frustrating " rather

than worse things (such as totally discouraging and incapacitating).

You are not " doing something wrong " if you have difficulty finding

a doctor to help you. There are some very helpful doctors, but

not too many. EXPECT THIS.

2. be prepared to read a lot. This list is a fine place to hang

around=== there are also other lists depending on your interests.

3. as soon as reasonably possible, get started on testing for

mercury and other toxic metals. this is a good idea REGARDLESS

of what Dx your son does or does not eventually get. Here is

info on how to do this:

/files/HOW_TO_hair_test

/files/Counting%2BRules

There are also other ways to test, but the hair test is fine.

4. other things to read: there are some books about biomedical

interventions. you can try

looking here for books (this includes other books too):

/files/Books_about_autism

Dana's website has lots of information on LOTS of helpful

stuff: http://www.autismchannel.net/dana/

If you have not already read the FAQ for this list it is here:

/files/Mercury-Autism%20FAQ

Here is a list of some of the terms and abbreviations used on this list:

/files/Glossary

Here is a compilation of posts written by Andy. If you want to know

more about chelation-- pretty much any aspect--- you can use this

as a good starting point:

/files/ANDY_INDEX

5. Many kids with ASD are significantly helped by chelation.

The above sentence may sound deceptively unimportant. Please

reread it if so. I think it is more-or-less the " main

message " of this list. THIS ALSO APPLIES TO A RANGE OF RELATED

DISORDERS, so I do not mean " just " autism. When you have a chance,

you can read about this in a lot of detail, here:

/files/LOVE_LETTERS

Many are also helped by a glutin free casein free diet (GFCF),

and by digestive enzymes. And supplements. And probably several

other things that I don't know as much about.

6. there are probably about a thousand kinds of ways that other parents

of ASD/pdd kids can offer you valuable support. I'm sure this is

no surprise, right? So, find other parents in your local area

as soon as reasonably possible. If you can find a few who are

into any sort of biomedical intervention that is best. email

and reading lists can offer support--- Can the school you mentioned

" just kids " help? Is there a bulletin board where you can post

your phone number? (I'm sure they won't give you anyone elses).

Any informal social events there you could attend?

well, I'm not sure if any of that was really the sort of info

you are looking for LOL.

best wishes,

Moria

[Guest guest]

Moira-

thanks so much for taking the time to email -

Your ideas and links are very appreciated-

as for your questions-

" Can the school you mentioned

" just kids " help? Is there a bulletin board where you can post

your phone number? (I'm sure they won't give you anyone elses).

Any informal social events there you could attend? "

-I was told my the director there is a group of parents who meet once a

week-

which honestly floored me, and i hope it's true. I won't know til about

June-

when he'll start going (we still have to do the IEP).

I've been reading a lot from different sources- and been talking to a lot of

people- friends and family- and everyone has been really POSITIVE about the

situation- and everyone says " Oh, now-a-days there are so many treatments "

like it's common knowledge. It's better than getting a " oh no " .

thanks again for your help-

you're an angel-

[Guest guest]

,

If I knew then what I know now I would have started the GFCF diet as

soon as I suspected something was wrong. We didn't start till 4

yo. I would read up on chelation and get moving on it asap. My son

is doing well (6 yo now)but he could be doing so much better if we

had done these things earlier. I think half of his problems are

from having his developement screwed up by being out of it for the

first 4 years. He is quite clear now, especially when compared to

before but he missed so much and got into so many odd behavior

patterns. Good luck, Maddie

> Moira-

> thanks so much for taking the time to email -

> Your ideas and links are very appreciated-

> as for your questions-

> " Can the school you mentioned

> " just kids " help? Is there a bulletin board where you can post

> your phone number? (I'm sure they won't give you anyone elses).

> Any informal social events there you could attend? "

> -I was told my the director there is a group of parents who meet

once a

> week-

> which honestly floored me, and i hope it's true. I won't know til

about

> June-

> when he'll start going (we still have to do the IEP).

>

> I've been reading a lot from different sources- and been talking

to a lot of

> people- friends and family- and everyone has been really POSITIVE

about the

> situation- and everyone says " Oh, now-a-days there are so many

treatments "

> like it's common knowledge. It's better than getting a " oh no " .

>

> thanks again for your help-

> you're an angel-

>

>

>

>

>

>

>

>

[Guest guest]

hey karen, i'm kathy 42 with a son (18) i have inflammatory spondylarthropy

and fibromyalgia, glaucoma, ulcer, and many other minor ailments. i have

tried many of the drugs and failed either due to ineffectiveness or side

effects didn't. currently on prednisone 5mg a day, buspar 10 mg a day, nexium

40 mg a day. i vent alot at my son and my mom via e-mail. i've been going

through a big mess with my insurance company, (which was also my employer) so

excuse me while i jump all over the place. you have found a great group.

always someone around to listen, help, support. kathy in il

[Guest guest]

Hi - I would like to introduce myself to the group.

My name is , I am 42 yrs old. I am married and have a son with

significant special needs, which is why I dont work outside the home.

My story in retrospect goes back about 5 yrs., although I just find out last

week that what I have been dealing with all this time is an arthritic

condition & believed to be rheumatoid arthritis. I am being sent to see a

rheumatologist on June 13th by my podiatrist, who tells me he believes I

have RA.

Looking back about 5 yrs ago, I remember not being able to go for a short

car ride without being unable to move when it was time to get out of the

car. I was limping & sore all over. I felt like an elderly woman in my late

thirties. I remmeber my mother-in-law saying to me. " you are too young to

be like this " (probably the only thing we've ever agreed on! LOL!)

I am obese and always have been, so I attributed this soreness to my lack of

being " in shape " . many times I began walking programs to only end up

getting bone spurs in my feet. That is when I first saw my podiatrist in

1997 for bone spurs in both heels. I went for physical therapy then for

months and eventually they did go away. Meanwhile, I continued to be very

imobile after car rides, noticed I couldnt sit in a movie chair as my spine

was killing me with pain.

Last sping, at this time, I broke both feet " without injury " . I had stress

fractures in the same bone on both feet at the same time. This ended up with

my being in two leg casts from the knee down for four months. I could not

drive, used a walker with the casts to get around, crawled on all fours up

the stairs to get my son off to school, etc. Eventually I had to hire a

cleaning person to come in until I got out of the casts. I cried when my

orhtopedic doctor told me both feet were fractured. I said, " what is wrong

with me, I didnt injure them? " He asked me if I ever heard of osteoporosis

and sent me to see an osteo specialist. I waited 4 months to get my appt. to

see him , all this time believing, as my orthopedic dr. did, that I had

osteoporosis. However, when I finally got to see him, he said my bones were

two standard deviations above the norm!! He looked at me and said, " can I

be quite honest with you? " I said of course. he said, " your weight is

breaking perfectly good bones. " Well, I know I am obese (250 lbs) but I

know many people much heavier than me who dont break their feet from their

weight. However, being scared at what he said, and he put it in writing, I

went ahead and had weight loss surgery just this April.

Meanwhile waiting for the surgery, my feet were in SO much pain, I went to

see a different orthopedic doctor. I told him my feet hurt all over and have

for a year. In fact, when he asked me several times " where " they hurt and I

kept saying " all over " , he yelled at me and said, " I SAID WHERE!! " I was

only telling him the truth all over. - He took Xray's - sd they were fine &

told me to " walk it out. " He sent me on my way. So, I decided to start

walking again - immediately I developed another bone spur.

I went back to my podiatrist a few weeks ago. By this time my foot hurt so

bad I cant even walk on it. He took Xrays and sd I developed a bone spur but

he was not sending me for physical therapy this time. I had told him about

my broken feet last year, my pain in my toes, etc. and he said I needed to

see a rheumatoid arthritis specialist.

I didnt think too much about it except was dissapointed that I had no relief

in my foot. Since that visit a few weeks ago, my spine hurts, my right wrist

hurts and my right shoulder hurts. Terribly!

The bad news is he had recommended I take NSAIDS, which I cannot take

because I just had a Lapband inserted around my stomach in April for my

weight loss surgery and those kind of meds will erode the Lapband!!

So, I had the weight loss surgery on the advise of the osteospecialist who

told me my weight was breaking my bones, now my podiatrist tells me that

that is not the case and that these conditions are ALL RELATED!

I got on the internet and starting reading about RA and became very

frightend and depressed. I have goals of doing all kinds of things when I

lost weight after my surgery & was fianlly in shape. I am more sore now than

I ever have been.

Last night I layed in bed for 3 hrs. in extreme pain. I worried about my

future and how I will be able to care for my son with special needs. I went

to my husband & told him I REALLY needed to talk. He said, " I just started

watching this movie " He has never been able to be there for me emotionally.

I am not here to complain about him, I am here because I am scared, in pain

right now & need support and I have no one to talk to.

Thanks to anyone who took the time to read this lengthy share.

Blessings,

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

i have what is called sero negative ra. meaning i dont have ra in my blood,

but based on my symptoms and elevated white blood count and sedementation

rates. i do. at least a form of it according to my rheumatologist. what it

means to me is pain. pretty much every day. a fever in the afternoon (from

the inflammation i was told) dizzy spells. pain in the neck back hips wrists

knuckles clavicle feet and ankles sometimes my knees too. matter of fact i

bent at the knees this morning to pick up some papers on the ground and my

knees felt like they were burning.

[Guest guest]

Hi Kathy - it is so nice to hear from you! I have so many questions being so

new to this so please bear with me.

My doctors report that I read referred to me as having inflammatory

spondylarthrophy. I looked it up on the internet but I really dont

understand much at his point. If you dont mind me asking, could you explain

what that means for you?

I also have another question (sorry) that I dont know if you can answer

since you didnt mention RA, but I read something about RA being dx'd with a

blood test. My question is - is RA only confirmed thru a bloodtest, I mean

could you have it and not have the blood work come back positive for it?

Also, is this a quick response type blood test or one that takes awhile to

get the results? I ask because I will be having one soon.

Thanks for all your help,

>hey karen, i'm kathy 42 with a son (18) i have inflammatory

>spondylarthropy

>and fibromyalgia, glaucoma, ulcer, and many other minor ailments. i have

>tried many of the drugs and failed either due to ineffectiveness or side

>effects didn't. currently on prednisone 5mg a day, buspar 10 mg a day,

>nexium

>40 mg a day. i vent alot at my son and my mom via e-mail. i've been going

>through a big mess with my insurance company, (which was also my employer)

>so

>excuse me while i jump all over the place. you have found a great group.

>always someone around to listen, help, support. kathy in il

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Hi , and welcome! I think you'll really enjoy this group. I've been

here for a few months now, and have received a lot of valuable advice as

well as support.

It sounds like you've really been through an ordeal with your foot pain, as

well as the pain you are having in various areas presently (which certainly

sounds like RA to me!). I can understand your fear and depression at the

thought of a diagnosis of RA, as I was diagnosed this past February. It has

been a real adjustment. There are so many plans I've made for my life that

I'm having to reevaluate. The good news is that there are more effective

medications than there have ever been, although they're expensive. I'm

certain that any RA veteran would agree that if there is a " good " time to

have to be diagnosed with RA, this is it.

I'm sorry your husband isn't being more supportive, that would certainly

make it harder. My husband has been very supportive, but I worry that he

will get fed up eventually. For that reason, I try to limit our

conversations about my health issues. Although, when I'm in a flare, it

really is the center of my universe. The pain is so bad you can't focus on

much else. I've been told that the first year after diagnosis is the worst,

because you don't have the disease under control. Keep your chin up.

Hugs,

Carol in FL

[ ] Re: new member intro

Hi - I would like to introduce myself to the group.

My name is , I am 42 yrs old. I am married and have a son with

significant special needs, which is why I dont work outside the home.

My story in retrospect goes back about 5 yrs., although I just find out last

week that what I have been dealing with all this time is an arthritic

condition & believed to be rheumatoid arthritis. I am being sent to see a

rheumatologist on June 13th by my podiatrist, who tells me he believes I

have RA.

Looking back about 5 yrs ago, I remember not being able to go for a short

car ride without being unable to move when it was time to get out of the

car. I was limping & sore all over. I felt like an elderly woman in my late

thirties. I remmeber my mother-in-law saying to me. " you are too young to

be like this " (probably the only thing we've ever agreed on! LOL!)

I am obese and always have been, so I attributed this soreness to my lack of

being " in shape " . many times I began walking programs to only end up

getting bone spurs in my feet. That is when I first saw my podiatrist in

1997 for bone spurs in both heels. I went for physical therapy then for

months and eventually they did go away. Meanwhile, I continued to be very

imobile after car rides, noticed I couldnt sit in a movie chair as my spine

was killing me with pain.

Last sping, at this time, I broke both feet " without injury " . I had stress

fractures in the same bone on both feet at the same time. This ended up with

my being in two leg casts from the knee down for four months. I could not

drive, used a walker with the casts to get around, crawled on all fours up

the stairs to get my son off to school, etc. Eventually I had to hire a

cleaning person to come in until I got out of the casts. I cried when my

orhtopedic doctor told me both feet were fractured. I said, " what is wrong

with me, I didnt injure them? " He asked me if I ever heard of osteoporosis

and sent me to see an osteo specialist. I waited 4 months to get my appt. to

see him , all this time believing, as my orthopedic dr. did, that I had

osteoporosis. However, when I finally got to see him, he said my bones were

two standard deviations above the norm!! He looked at me and said, " can I

be quite honest with you? " I said of course. he said, " your weight is

breaking perfectly good bones. " Well, I know I am obese (250 lbs) but I

know many people much heavier than me who dont break their feet from their

weight. However, being scared at what he said, and he put it in writing, I

went ahead and had weight loss surgery just this April.

Meanwhile waiting for the surgery, my feet were in SO much pain, I went to

see a different orthopedic doctor. I told him my feet hurt all over and have

for a year. In fact, when he asked me several times " where " they hurt and I

kept saying " all over " , he yelled at me and said, " I SAID WHERE!! " I was

only telling him the truth all over. - He took Xray's - sd they were fine &

told me to " walk it out. " He sent me on my way. So, I decided to start

walking again - immediately I developed another bone spur.

I went back to my podiatrist a few weeks ago. By this time my foot hurt so

bad I cant even walk on it. He took Xrays and sd I developed a bone spur but

he was not sending me for physical therapy this time. I had told him about

my broken feet last year, my pain in my toes, etc. and he said I needed to

see a rheumatoid arthritis specialist.

I didnt think too much about it except was dissapointed that I had no relief

in my foot. Since that visit a few weeks ago, my spine hurts, my right wrist

hurts and my right shoulder hurts. Terribly!

The bad news is he had recommended I take NSAIDS, which I cannot take

because I just had a Lapband inserted around my stomach in April for my

weight loss surgery and those kind of meds will erode the Lapband!!

So, I had the weight loss surgery on the advise of the osteospecialist who

told me my weight was breaking my bones, now my podiatrist tells me that

that is not the case and that these conditions are ALL RELATED!

I got on the internet and starting reading about RA and became very

frightend and depressed. I have goals of doing all kinds of things when I

lost weight after my surgery & was fianlly in shape. I am more sore now than

I ever have been.

Last night I layed in bed for 3 hrs. in extreme pain. I worried about my

future and how I will be able to care for my son with special needs. I went

to my husband & told him I REALLY needed to talk. He said, " I just started

watching this movie " He has never been able to be there for me emotionally.

I am not here to complain about him, I am here because I am scared, in pain

right now & need support and I have no one to talk to.

Thanks to anyone who took the time to read this lengthy share.

Blessings,

_________________________________________________________________

Join the world's largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Hi Carol,

Thanks so much for writing & welcoming me!

It is hopeful to hear about the medications that are out and may be of help

to me.

You mentioned the adjustment period you have/are going thru - I am going

thru some real guilt right now as I had promised my son when I lost my

weight and got in shape after my weight loss surgery, we would bike ride

together and go for walks,etc. This realy was my goal and my dream as I

thought my aches were due to my weight. He has no friends being a child

with special needs & he was really looking forward to this as much as I was.

In my heart I feel like I have let him down BIG time, although

intellectually I know it wasnt my plan to end up like this.

I did just sign us up at a swim club so we can go swimming together though.

So, it's just a change in the plans for now. That's the only way to look at

it.

I have always loved gardening & last year we bought a new home with a huge

yard so my husband & I could garden together. He has recently planted his

vegetable garden and I cant do anything I planned. I miss my flower

gardening. I look at the yard and see what I had visioned not done and it

feels depressing. But then I say to myself, thank you God that I can walk

today. I have to keep an attittude of gratitude for what I can do, while at

the same time allowing myself to go thru the process of adjustment as you

have described.

I have two weeks until I get to my first appt. with a rheumatologist. I cant

wait as I have never been in so much pain on a continous basis for so long.

My primary care physician set me up with an August appt. to see a

rheumatologist and I cant even walk right now. I fired her, found my own new

primary care physician and got an appt. in two weeks with a rheumatologist

myself.

I'm rambling - thanks for letting me vent.

Blessings,

>From: " Carol " <carol@...>

>Reply-

>< >

>Subject: RE: [ ] Re: new member intro

>Date: Sun, 26 May 2002 16:24:47 -0400

>

>Hi , and welcome! I think you'll really enjoy this group. I've been

>here for a few months now, and have received a lot of valuable advice as

>well as support.

>

>It sounds like you've really been through an ordeal with your foot pain, as

>well as the pain you are having in various areas presently (which certainly

>sounds like RA to me!). I can understand your fear and depression at the

>thought of a diagnosis of RA, as I was diagnosed this past February. It

>has

>been a real adjustment. There are so many plans I've made for my life that

>I'm having to reevaluate. The good news is that there are more effective

>medications than there have ever been, although they're expensive. I'm

>certain that any RA veteran would agree that if there is a " good " time to

>have to be diagnosed with RA, this is it.

>

>I'm sorry your husband isn't being more supportive, that would certainly

>make it harder. My husband has been very supportive, but I worry that he

>will get fed up eventually. For that reason, I try to limit our

>conversations about my health issues. Although, when I'm in a flare, it

>really is the center of my universe. The pain is so bad you can't focus on

>much else. I've been told that the first year after diagnosis is the

>worst,

>because you don't have the disease under control. Keep your chin up.

>

>Hugs,

>

>Carol in FL

>

> [ ] Re: new member intro

>

>Hi - I would like to introduce myself to the group.

>

>My name is , I am 42 yrs old. I am married and have a son with

>significant special needs, which is why I dont work outside the home.

>

>My story in retrospect goes back about 5 yrs., although I just find out

>last

>week that what I have been dealing with all this time is an arthritic

>condition & believed to be rheumatoid arthritis. I am being sent to see a

>rheumatologist on June 13th by my podiatrist, who tells me he believes I

>have RA.

>

>Looking back about 5 yrs ago, I remember not being able to go for a short

>car ride without being unable to move when it was time to get out of the

>car. I was limping & sore all over. I felt like an elderly woman in my late

>thirties. I remmeber my mother-in-law saying to me. " you are too young to

>be like this " (probably the only thing we've ever agreed on! LOL!)

>

>I am obese and always have been, so I attributed this soreness to my lack

>of

>being " in shape " . many times I began walking programs to only end up

>getting bone spurs in my feet. That is when I first saw my podiatrist in

>1997 for bone spurs in both heels. I went for physical therapy then for

>months and eventually they did go away. Meanwhile, I continued to be very

>imobile after car rides, noticed I couldnt sit in a movie chair as my spine

>was killing me with pain.

>

>Last sping, at this time, I broke both feet " without injury " . I had stress

>fractures in the same bone on both feet at the same time. This ended up

>with

>my being in two leg casts from the knee down for four months. I could not

>drive, used a walker with the casts to get around, crawled on all fours up

>the stairs to get my son off to school, etc. Eventually I had to hire a

>cleaning person to come in until I got out of the casts. I cried when my

>orhtopedic doctor told me both feet were fractured. I said, " what is wrong

>with me, I didnt injure them? " He asked me if I ever heard of osteoporosis

>and sent me to see an osteo specialist. I waited 4 months to get my appt.

>to

>see him , all this time believing, as my orthopedic dr. did, that I had

>osteoporosis. However, when I finally got to see him, he said my bones were

>two standard deviations above the norm!! He looked at me and said, " can I

>be quite honest with you? " I said of course. he said, " your weight is

>breaking perfectly good bones. " Well, I know I am obese (250 lbs) but I

>know many people much heavier than me who dont break their feet from their

>weight. However, being scared at what he said, and he put it in writing, I

>went ahead and had weight loss surgery just this April.

>

>Meanwhile waiting for the surgery, my feet were in SO much pain, I went to

>see a different orthopedic doctor. I told him my feet hurt all over and

>have

>for a year. In fact, when he asked me several times " where " they hurt and I

>kept saying " all over " , he yelled at me and said, " I SAID WHERE!! " I was

>only telling him the truth all over. - He took Xray's - sd they were fine &

>told me to " walk it out. " He sent me on my way. So, I decided to start

>walking again - immediately I developed another bone spur.

>

>I went back to my podiatrist a few weeks ago. By this time my foot hurt so

>bad I cant even walk on it. He took Xrays and sd I developed a bone spur

>but

>he was not sending me for physical therapy this time. I had told him about

>my broken feet last year, my pain in my toes, etc. and he said I needed to

>see a rheumatoid arthritis specialist.

>

>I didnt think too much about it except was dissapointed that I had no

>relief

>in my foot. Since that visit a few weeks ago, my spine hurts, my right

>wrist

>hurts and my right shoulder hurts. Terribly!

>

>The bad news is he had recommended I take NSAIDS, which I cannot take

>because I just had a Lapband inserted around my stomach in April for my

>weight loss surgery and those kind of meds will erode the Lapband!!

>

>So, I had the weight loss surgery on the advise of the osteospecialist who

>told me my weight was breaking my bones, now my podiatrist tells me that

>that is not the case and that these conditions are ALL RELATED!

>

>I got on the internet and starting reading about RA and became very

>frightend and depressed. I have goals of doing all kinds of things when I

>lost weight after my surgery & was fianlly in shape. I am more sore now

>than

>I ever have been.

>

>Last night I layed in bed for 3 hrs. in extreme pain. I worried about my

>future and how I will be able to care for my son with special needs. I went

>to my husband & told him I REALLY needed to talk. He said, " I just started

>watching this movie " He has never been able to be there for me

>emotionally.

>I am not here to complain about him, I am here because I am scared, in pain

>right now & need support and I have no one to talk to.

>

>Thanks to anyone who took the time to read this lengthy share.

>

>Blessings,

>

>

>

>

>

>_________________________________________________________________

>Join the world's largest e-mail service with MSN Hotmail.

>http://www.hotmail.com

>

>

>

>

>

[Guest guest]

---Hello , I am 51 and have had RA for 15 years and I still have

not come to terms with it. I believe a rhuemy can often feel your

joint and it gives them an idea what kind of Arthritis you may

have,besides blood work and xrays. I hope you find a good doctor my

first doctor made me feel like a whiner and I really am not. I also

believe no one understands RA unless they have it themselves. People

that know I have RA say " oh I know I hurt my knee and now I have

arthritis in it. " But they still don't really know because my doctor

said (that is my new doctor) that RA pain is much greater than

osteo. The thing I am getting at is if they don't have it it is hard

for them to know.

I also know about the guilt thing because I feel quilty because I

can't do many of the things I would like to do but I also refuse to

add more injury to my joint. You will probably find it a little

easier on your joint with out the weight on them which only make

since but the RA will still be there. I do know some people that

went into remission and some get a great deal of benefit from the

different meds. I take methotrexate (which is not 100 percent

anymore) 27ml injections and Lodine XL for inflamation. I hurt but I

am much better off than some.

I haven't done a lot with flowers but I want to put some in pots so I

can bring them to a bench waist high to tend them they are so pretty

and it makes you feel much better to see the colors.

By the way I am also overweight and have type II diabetes and really

need to make some life style changes. Keeps me busy with trying to

stay health.

Hope they can find something to make you feel better, some answers

will help. Take Care. in WA

> >_________________________________________________________________

> >Join the world's largest e-mail service with MSN Hotmail.

> >http://www.hotmail.com

> >

> >

> >

> >

> >

[Guest guest]

Hi ,

Thank you so much for taking the time to write to me. It meant so much as

you really touched on the emotional aspects of what you are dealing with and

the ongoing process of trying to come to terms with it.

This really touched me and made me feel very supported!! I dont consider

myself a whiner either. However, I have been in pain for weeks now and I am

sure many of you much longer and more intense than I. But today I went to

take my son swimming for our first swim time together since I joined the

pool club. He was so excited & I felt good, feeling like I was being

proactive and doing what I could to make the best of this situation for us

both. I have a car that is a standard - it was a gift from my husband for

my 40th birthday and a car that I always dreamed of having since we dated

many years ago. Well, I was in so much pain, I could not drive my car. I

have been having awful pain in my right wrist - I even wanted to mix myself

some tunafish & mayo today & felt it was too much but didnt want to bother

anyone by asking them for help. Anyway, driving was so painful on my wrist,

I had to lay my right arm on my lap & turn around & get home. This was a

first for me. I came in the door like a mad woman. I was SO angry. I was

yelling at both my husband & my son. All the anger I had at this condition I

was in, I was directing at them. After all my yelling at them, I sat down &

cried my eyes out. I apologized to them and I told them I am so so scared.

That I feel we had already been given enough in life to cope with and that

this certainly wasnt fair. Why did this have to happen to me when I was

ALREADY overwhelmed reasing a child who will never lead an independent life

and needs constant supports. I thought of all the families I see who seem

to sail through life so easily and I was ANGRY!! Aftr I let all my feelings

out, they were both still there to give me unconditional love. And then I

felt guilty - like I am not handling this as I should be or good enough.

That I am feeling sorry for myself and there is so much worse that I could

be facing, etc. So, I am struggling with the emotional pain of coming to

terms with this, the anger at the limitations that the physical pain puts on

me , the guilt for misplacing my anger and feeling so inept at coping with

this.

My husband & son are at the movies right now and I am home in bed in pain

again today. I cant sit in a chair long enough to see a movie. So, I am

feeling left out again. I feel like this is taking a very big toll on me

emotionally and I feel angry at everyone.

Thank you for your heartfelt share,

>---Hello , I am 51 and have had RA for 15 years and I still have

>not come to terms with it. I believe a rhuemy can often feel your

>joint and it gives them an idea what kind of Arthritis you may

>have,besides blood work and xrays. I hope you find a good doctor my

>first doctor made me feel like a whiner and I really am not. I also

>believe no one understands RA unless they have it themselves. People

>that know I have RA say " oh I know I hurt my knee and now I have

>arthritis in it. " But they still don't really know because my doctor

>said (that is my new doctor) that RA pain is much greater than

>osteo. The thing I am getting at is if they don't have it it is hard

>for them to know.

>

>I also know about the guilt thing because I feel quilty because I

>can't do many of the things I would like to do but I also refuse to

>add more injury to my joint. You will probably find it a little

>easier on your joint with out the weight on them which only make

>since but the RA will still be there. I do know some people that

>went into remission and some get a great deal of benefit from the

>different meds. I take methotrexate (which is not 100 percent

>anymore) 27ml injections and Lodine XL for inflamation. I hurt but I

>am much better off than some.

>

>I haven't done a lot with flowers but I want to put some in pots so I

>can bring them to a bench waist high to tend them they are so pretty

>and it makes you feel much better to see the colors.

>

>By the way I am also overweight and have type II diabetes and really

>need to make some life style changes. Keeps me busy with trying to

>stay health.

>

>Hope they can find something to make you feel better, some answers

>will help. Take Care. in WA

> > >_________________________________________________________________

> > >Join the world's largest e-mail service with MSN Hotmail.

> > >http://www.hotmail.com

> > >

> > >

> > >

> > >

> > >

[Guest guest]

> , I think the anger is something we all go through. Just take

care until you can see your rheumy and maybe you can get a

diagnosis. There are some meds out there now that will help the

inflamation and the pain. I always hated taking meds but here I am

even giving my own injections. Unfortunately I think we all feel a

guilty and it isn't our fault, we certainly wouldn't ask for a life

with pain.

I feel guilty because I was a hairdresser for 33 years and helped

with the finances and now I can't do hair, I can't think of many jobs

I can do because the RA restricts me from standing to long sitting to

long, and using my hand for any amount of time. Its the pits.

It is a go time if you have to have it to have it now, because they

do have a lot of meds. out there to help. Oops there I go babbling

again.

Like many have told you, you can vent here. They have some really

good information also. Since I have been reading the messages posted

I have learned alot about the disease. Take care and hang in there

hopefully you will have some relief soon.

in WA

>

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp.

[Guest guest]

Hi , my name is Debbie. I'm 44 and live alone with my hubby. Our kids

are grown. I started having symptoms about 6 years ago myself and am also

in the diagnosis process and almost there. It's been 6 months since my pain

escalated to include most of my joints. Before it was mostly my right hand

and then it moved to my knees last year. Now it has moved on to my feet,

ankles, hips and my shoulders. Two years ago, my migraines got so bad, my

doctor put me on a pain blocker to control them. They decided the Advil I

had taken for so long was actually causing my headaches. I started having

lots more pain when the Advil was out of my system. My facial and temple

pain was found to not be the migraines, but to be inflammation in my jaw.

It all came so gradual, that I didn't think of arthritis until it moved to

my other joints. My grandmother had RA, but the only thing I knew about it

was that it caused the deformed hands. Didn't know the pain, or the

swelling.

I am scared too of the future. I'm going through the same denial, grief,

anger, frustration, and again denial as you've described. I've told myself

to just get over it, but that's not as easy as it sounds coming out of my

own mouth. I feel worthless, cram in as much stuff as I can do when I'm

feeling good cause I know it's going to hit again. I asked a few days ago

about possible remission, because I had been feeling so good, only to find

my knees hurting again the next day. I get my hopes up that this will all

go away, but inside I know, it's not going to just go away, and it's hard to

accept. I want to scream at times. Rite now I'm frustrated with my doctors

not communicating. My rheumy wants me to have more radiographic imaging to

look closer at the " periarticular osteopenia " the x-rays showed to make a

definite diagnosis of RA, and start me on the disease modifying drugs, but

my PCP hasn't gotten the letter from my rheumy yet to know what he has asked

for. I'm going to call again tomorrow to find what's happened.

Welcome . I'm glad to have others to go through this hard time with.

Together, it's better than alone. I know, no one knows what it's like

except for those who living with this pain and uncertainty. And no one

knows what to say to help us through except those that have lived it and are

living it with us.

Debbie Mc

-- [ ] Re: new member intro

Hi - I would like to introduce myself to the group.

My name is , I am 42 yrs old. I am married and have a son with

significant special needs, which is why I dont work outside the home.

My story in retrospect goes back about 5 yrs., although I just find out last

week that what I have been dealing with all this time is an arthritic

condition & believed to be rheumatoid arthritis. I am being sent to see a

rheumatologist on June 13th by my podiatrist, who tells me he believes I

have RA.

Looking back about 5 yrs ago, I remember not being able to go for a short

car ride without being unable to move when it was time to get out of the

car. I was limping & sore all over. I felt like an elderly woman in my late

thirties. I remmeber my mother-in-law saying to me. " you are too young to

be like this " (probably the only thing we've ever agreed on! LOL!)

I am obese and always have been, so I attributed this soreness to my lack of

being " in shape " . many times I began walking programs to only end up

getting bone spurs in my feet. That is when I first saw my podiatrist in

1997 for bone spurs in both heels. I went for physical therapy then for

months and eventually they did go away. Meanwhile, I continued to be very

imobile after car rides, noticed I couldnt sit in a movie chair as my spine

was killing me with pain.

Last sping, at this time, I broke both feet " without injury " . I had stress

fractures in the same bone on both feet at the same time. This ended up with

my being in two leg casts from the knee down for four months. I could not

drive, used a walker with the casts to get around, crawled on all fours up

the stairs to get my son off to school, etc. Eventually I had to hire a

cleaning person to come in until I got out of the casts. I cried when my

orhtopedic doctor told me both feet were fractured. I said, " what is wrong

with me, I didnt injure them? " He asked me if I ever heard of osteoporosis

and sent me to see an osteo specialist. I waited 4 months to get my appt. to

see him , all this time believing, as my orthopedic dr. did, that I had

osteoporosis. However, when I finally got to see him, he said my bones were

two standard deviations above the norm!! He looked at me and said, " can I

be quite honest with you? " I said of course. he said, " your weight is

breaking perfectly good bones. " Well, I know I am obese (250 lbs) but I

know many people much heavier than me who dont break their feet from their

weight. However, being scared at what he said, and he put it in writing, I

went ahead and had weight loss surgery just this April.

Meanwhile waiting for the surgery, my feet were in SO much pain, I went to

see a different orthopedic doctor. I told him my feet hurt all over and have

for a year. In fact, when he asked me several times " where " they hurt and I

kept saying " all over " , he yelled at me and said, " I SAID WHERE!! " I was

only telling him the truth all over. - He took Xray's - sd they were fine &

told me to " walk it out. " He sent me on my way. So, I decided to start

walking again - immediately I developed another bone spur.

I went back to my podiatrist a few weeks ago. By this time my foot hurt so

bad I cant even walk on it. He took Xrays and sd I developed a bone spur but

he was not sending me for physical therapy this time. I had told him about

my broken feet last year, my pain in my toes, etc. and he said I needed to

see a rheumatoid arthritis specialist.

I didnt think too much about it except was dissapointed that I had no relief

in my foot. Since that visit a few weeks ago, my spine hurts, my right wrist

hurts and my right shoulder hurts. Terribly!

The bad news is he had recommended I take NSAIDS, which I cannot take

because I just had a Lapband inserted around my stomach in April for my

weight loss surgery and those kind of meds will erode the Lapband!!

So, I had the weight loss surgery on the advise of the osteospecialist who

told me my weight was breaking my bones, now my podiatrist tells me that

that is not the case and that these conditions are ALL RELATED!

I got on the internet and starting reading about RA and became very

frightend and depressed. I have goals of doing all kinds of things when I

lost weight after my surgery & was fianlly in shape. I am more sore now than

I ever have been.

Last night I layed in bed for 3 hrs. in extreme pain. I worried about my

future and how I will be able to care for my son with special needs. I went

to my husband & told him I REALLY needed to talk. He said, " I just started

watching this movie " He has never been able to be there for me emotionally.

I am not here to complain about him, I am here because I am scared, in pain

right now & need support and I have no one to talk to.

Thanks to anyone who took the time to read this lengthy share.

Blessings,

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

, I went through an angry phase also. I agree with you that I just don

't understand why some families sail through life, and I try to be a good

person and live a life the Lord would wish me to live, and am going through

this hardship. Even as I read your post, I still get a little angry. I've

read that hardships are learning opportunities, but I honestly feel like I'

ve learned enough!

I also have trouble driving when I hurt. I have a big SUV (an Excursion-

TOO big) and it's really kind of hard to get in if I'm sore. Also, it seems

like as I go around corners my body shifts a lot and it gives me pain. Not

to mention it's harder to steer than a car, and if my shoulder is acting up

that is a problem. But shifting? THAT would really be tough! I have been

doing really well, but tonight I feel like I'm starting to flare, and I just

pray I'm not. I am just not ready for that, not again.

I bought a book from the arthritis foundation that helped me to come to

terms with the disease: Celebrate Life: New Attitudes for Living with

Chronic Illness

<http://www.arthritis.org/AFStore/singleproduct.asp?idproduct=2841 & idcat=3>

.. It really had good information for someone grieving his or her diagnosis.

Hugs,

Carol in FL

Re: [ ] Re: new member intro

Hi ,

Thank you so much for taking the time to write to me. It meant so much as

you really touched on the emotional aspects of what you are dealing with and

the ongoing process of trying to come to terms with it.

This really touched me and made me feel very supported!! I dont consider

myself a whiner either. However, I have been in pain for weeks now and I am

sure many of you much longer and more intense than I. But today I went to

take my son swimming for our first swim time together since I joined the

pool club. He was so excited & I felt good, feeling like I was being

proactive and doing what I could to make the best of this situation for us

both. I have a car that is a standard - it was a gift from my husband for

my 40th birthday and a car that I always dreamed of having since we dated

many years ago. Well, I was in so much pain, I could not drive my car. I

have been having awful pain in my right wrist - I even wanted to mix myself

some tunafish & mayo today & felt it was too much but didnt want to bother

anyone by asking them for help. Anyway, driving was so painful on my wrist,

I had to lay my right arm on my lap & turn around & get home. This was a

first for me. I came in the door like a mad woman. I was SO angry. I was

yelling at both my husband & my son. All the anger I had at this condition I

was in, I was directing at them. After all my yelling at them, I sat down &

cried my eyes out. I apologized to them and I told them I am so so scared.

That I feel we had already been given enough in life to cope with and that

this certainly wasnt fair. Why did this have to happen to me when I was

ALREADY overwhelmed reasing a child who will never lead an independent life

and needs constant supports. I thought of all the families I see who seem

to sail through life so easily and I was ANGRY!! Aftr I let all my feelings

out, they were both still there to give me unconditional love. And then I

felt guilty - like I am not handling this as I should be or good enough.

That I am feeling sorry for myself and there is so much worse that I could

be facing, etc. So, I am struggling with the emotional pain of coming to

terms with this, the anger at the limitations that the physical pain puts on

me , the guilt for misplacing my anger and feeling so inept at coping with

this.

My husband & son are at the movies right now and I am home in bed in pain

again today. I cant sit in a chair long enough to see a movie. So, I am

feeling left out again. I feel like this is taking a very big toll on me

emotionally and I feel angry at everyone.

Thank you for your heartfelt share,

>---Hello , I am 51 and have had RA for 15 years and I still have

>not come to terms with it. I believe a rhuemy can often feel your

>joint and it gives them an idea what kind of Arthritis you may

>have,besides blood work and xrays. I hope you find a good doctor my

>first doctor made me feel like a whiner and I really am not. I also

>believe no one understands RA unless they have it themselves. People

>that know I have RA say " oh I know I hurt my knee and now I have

>arthritis in it. " But they still don't really know because my doctor

>said (that is my new doctor) that RA pain is much greater than

>osteo. The thing I am getting at is if they don't have it it is hard

>for them to know.

>

>I also know about the guilt thing because I feel quilty because I

>can't do many of the things I would like to do but I also refuse to

>add more injury to my joint. You will probably find it a little

>easier on your joint with out the weight on them which only make

>since but the RA will still be there. I do know some people that

>went into remission and some get a great deal of benefit from the

>different meds. I take methotrexate (which is not 100 percent

>anymore) 27ml injections and Lodine XL for inflamation. I hurt but I

>am much better off than some.

>

>I haven't done a lot with flowers but I want to put some in pots so I

>can bring them to a bench waist high to tend them they are so pretty

>and it makes you feel much better to see the colors.

>

>By the way I am also overweight and have type II diabetes and really

>need to make some life style changes. Keeps me busy with trying to

>stay health.

>

>Hope they can find something to make you feel better, some answers

>will help. Take Care. in WA

> > >_________________________________________________________________

> > >Join the world's largest e-mail service with MSN Hotmail.

> > > http://www.hotmail.com

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Dear -

Hi - I'm also new here. I was diagnosed with RA a few weeks ago. I've had

a lot of pain and other problems, but luckily, no broken bones. I'm 30

years old and my doctor estimates that I've had RA for at least a year.

I'm so sorry you're having these problems. I think its a great idea to see

the rheumatologist. I went through a year of testing (including tests by a

neurologist and orthopedist) before my podiatrist sent me to a

rheumatologist. Then it was only about a week until I had a diagnosis, and

I had relief (prednisone) the next day.

I think its great that you are losing weight. I also have quite a bit of

weight to lose, but I'm trying Weight Watchers - doing pretty well.

However, I find it really unlikely that normal, healthy bones could break

from your weight. Definitely something that needs to be looked into

further.

I've been very fortunate - my family, friends and job are pretty supportive.

Hopefully, your husband will be supportive too once you get a chance to

discuss the situation with him. Hang in there, and feel free to e-mail me

if you need to chat or ask any questions.

Take Care - in Virginia

>From: " klc youlater " <castaway41@...>

>Reply-

>

>Subject: [ ] Re: new member intro

>Date: Sun, 26 May 2002 14:59:22 +0000

>

>Hi - I would like to introduce myself to the group.

>

>My name is , I am 42 yrs old. I am married and have a son with

>significant special needs, which is why I dont work outside the home.

>

>My story in retrospect goes back about 5 yrs., although I just find out

>last

>week that what I have been dealing with all this time is an arthritic

>condition & believed to be rheumatoid arthritis. I am being sent to see a

>rheumatologist on June 13th by my podiatrist, who tells me he believes I

>have RA.

>

>Looking back about 5 yrs ago, I remember not being able to go for a short

>car ride without being unable to move when it was time to get out of the

>car. I was limping & sore all over. I felt like an elderly woman in my late

>thirties. I remmeber my mother-in-law saying to me. " you are too young to

>be like this " (probably the only thing we've ever agreed on! LOL!)

>

>I am obese and always have been, so I attributed this soreness to my lack

>of

>being " in shape " . many times I began walking programs to only end up

>getting bone spurs in my feet. That is when I first saw my podiatrist in

>1997 for bone spurs in both heels. I went for physical therapy then for

>months and eventually they did go away. Meanwhile, I continued to be very

>imobile after car rides, noticed I couldnt sit in a movie chair as my spine

>was killing me with pain.

>

>Last sping, at this time, I broke both feet " without injury " . I had stress

>fractures in the same bone on both feet at the same time. This ended up

>with

>my being in two leg casts from the knee down for four months. I could not

>drive, used a walker with the casts to get around, crawled on all fours up

>the stairs to get my son off to school, etc. Eventually I had to hire a

>cleaning person to come in until I got out of the casts. I cried when my

>orhtopedic doctor told me both feet were fractured. I said, " what is wrong

>with me, I didnt injure them? " He asked me if I ever heard of osteoporosis

>and sent me to see an osteo specialist. I waited 4 months to get my appt.

>to

>see him , all this time believing, as my orthopedic dr. did, that I had

>osteoporosis. However, when I finally got to see him, he said my bones were

>two standard deviations above the norm!! He looked at me and said, " can I

>be quite honest with you? " I said of course. he said, " your weight is

>breaking perfectly good bones. " Well, I know I am obese (250 lbs) but I

>know many people much heavier than me who dont break their feet from their

>weight. However, being scared at what he said, and he put it in writing, I

>went ahead and had weight loss surgery just this April.

>

>Meanwhile waiting for the surgery, my feet were in SO much pain, I went to

>see a different orthopedic doctor. I told him my feet hurt all over and

>have

>for a year. In fact, when he asked me several times " where " they hurt and I

>kept saying " all over " , he yelled at me and said, " I SAID WHERE!! " I was

>only telling him the truth all over. - He took Xray's - sd they were fine &

>told me to " walk it out. " He sent me on my way. So, I decided to start

>walking again - immediately I developed another bone spur.

>

>I went back to my podiatrist a few weeks ago. By this time my foot hurt so

>bad I cant even walk on it. He took Xrays and sd I developed a bone spur

>but

>he was not sending me for physical therapy this time. I had told him about

>my broken feet last year, my pain in my toes, etc. and he said I needed to

>see a rheumatoid arthritis specialist.

>

>I didnt think too much about it except was dissapointed that I had no

>relief

>in my foot. Since that visit a few weeks ago, my spine hurts, my right

>wrist

>hurts and my right shoulder hurts. Terribly!

>

>The bad news is he had recommended I take NSAIDS, which I cannot take

>because I just had a Lapband inserted around my stomach in April for my

>weight loss surgery and those kind of meds will erode the Lapband!!

>

>So, I had the weight loss surgery on the advise of the osteospecialist who

>told me my weight was breaking my bones, now my podiatrist tells me that

>that is not the case and that these conditions are ALL RELATED!

>

>I got on the internet and starting reading about RA and became very

>frightend and depressed. I have goals of doing all kinds of things when I

>lost weight after my surgery & was fianlly in shape. I am more sore now

>than

>I ever have been.

>

>Last night I layed in bed for 3 hrs. in extreme pain. I worried about my

>future and how I will be able to care for my son with special needs. I went

>to my husband & told him I REALLY needed to talk. He said, " I just started

>watching this movie " He has never been able to be there for me

>emotionally.

>I am not here to complain about him, I am here because I am scared, in pain

>right now & need support and I have no one to talk to.

>

>Thanks to anyone who took the time to read this lengthy share.

>

>Blessings,

>

>

>

>

>

>_________________________________________________________________

>Join the world’s largest e-mail service with MSN Hotmail.

>http://www.hotmail.com

>

>

>

>

>

[Guest guest]

,

Have you had your thyroid checked?

Excess thyroid hormone will cause your bones to thin and weaken. When you

had the test done to check your bone density, did they look specifically at

your feet or just your hip and spine?

I'm not sure of what bone in your feet broke, but here is a link describing

a fractured foot in the same area of both feet caused by excess load:

http://www.orthopedictechreview.com/issues/apr00/pg15.htm

The bones of the feet are small and are easier to fracture. It's great

that your bone density test came out so good, but if you have RA and it is

affecting your feet, it could weaken the bones of the feet making your more

prone to fracture.

Can you get your appointment moved up? Call them and ask to be put on the

cancellation list. It's to long to be in so much pain. I know how scary

RA is, but it can be managed with proper meds. Sometimes it takes a while

to find the right ones. If you have access to a pool, water therapy will

keep the stress off of your joints but allow you to exercise. The pool is

my salvation. Hope you feel better.

a

On 5/26/02 10:59 AM, " klc youlater " <castaway41@...> wrote:

> Hi - I would like to introduce myself to the group.

>

> My name is , I am 42 yrs old. I am married and have a son with

> significant special needs, which is why I dont work outside the home.

>

> My story in retrospect goes back about 5 yrs., although I just find out last

> week that what I have been dealing with all this time is an arthritic

> condition & believed to be rheumatoid arthritis. I am being sent to see a

> rheumatologist on June 13th by my podiatrist, who tells me he believes I

> have RA.

>

> Looking back about 5 yrs ago, I remember not being able to go for a short

> car ride without being unable to move when it was time to get out of the

> car. I was limping & sore all over. I felt like an elderly woman in my late

> thirties. I remmeber my mother-in-law saying to me. " you are too young to

> be like this " (probably the only thing we've ever agreed on! LOL!)

>

> I am obese and always have been, so I attributed this soreness to my lack of

> being " in shape " . many times I began walking programs to only end up

> getting bone spurs in my feet. That is when I first saw my podiatrist in

> 1997 for bone spurs in both heels. I went for physical therapy then for

> months and eventually they did go away. Meanwhile, I continued to be very

> imobile after car rides, noticed I couldnt sit in a movie chair as my spine

> was killing me with pain.

>

> Last sping, at this time, I broke both feet " without injury " . I had stress

> fractures in the same bone on both feet at the same time. This ended up with

> my being in two leg casts from the knee down for four months. I could not

> drive, used a walker with the casts to get around, crawled on all fours up

> the stairs to get my son off to school, etc. Eventually I had to hire a

> cleaning person to come in until I got out of the casts. I cried when my

> orhtopedic doctor told me both feet were fractured. I said, " what is wrong

> with me, I didnt injure them? " He asked me if I ever heard of osteoporosis

> and sent me to see an osteo specialist. I waited 4 months to get my appt. to

> see him , all this time believing, as my orthopedic dr. did, that I had

> osteoporosis. However, when I finally got to see him, he said my bones were

> two standard deviations above the norm!! He looked at me and said, " can I

> be quite honest with you? " I said of course. he said, " your weight is

> breaking perfectly good bones. " Well, I know I am obese (250 lbs) but I

> know many people much heavier than me who dont break their feet from their

> weight. However, being scared at what he said, and he put it in writing, I

> went ahead and had weight loss surgery just this April.

>

> Meanwhile waiting for the surgery, my feet were in SO much pain, I went to

> see a different orthopedic doctor. I told him my feet hurt all over and have

> for a year. In fact, when he asked me several times " where " they hurt and I

> kept saying " all over " , he yelled at me and said, " I SAID WHERE!! " I was

> only telling him the truth all over. - He took Xray's - sd they were fine &

> told me to " walk it out. " He sent me on my way. So, I decided to start

> walking again - immediately I developed another bone spur.

>

> I went back to my podiatrist a few weeks ago. By this time my foot hurt so

> bad I cant even walk on it. He took Xrays and sd I developed a bone spur but

> he was not sending me for physical therapy this time. I had told him about

> my broken feet last year, my pain in my toes, etc. and he said I needed to

> see a rheumatoid arthritis specialist.

>

> I didnt think too much about it except was dissapointed that I had no relief

> in my foot. Since that visit a few weeks ago, my spine hurts, my right wrist

> hurts and my right shoulder hurts. Terribly!

>

> The bad news is he had recommended I take NSAIDS, which I cannot take

> because I just had a Lapband inserted around my stomach in April for my

> weight loss surgery and those kind of meds will erode the Lapband!!

>

> So, I had the weight loss surgery on the advise of the osteospecialist who

> told me my weight was breaking my bones, now my podiatrist tells me that

> that is not the case and that these conditions are ALL RELATED!

>

> I got on the internet and starting reading about RA and became very

> frightend and depressed. I have goals of doing all kinds of things when I

> lost weight after my surgery & was fianlly in shape. I am more sore now than

> I ever have been.

>

> Last night I layed in bed for 3 hrs. in extreme pain. I worried about my

> future and how I will be able to care for my son with special needs. I went

> to my husband & told him I REALLY needed to talk. He said, " I just started

> watching this movie " He has never been able to be there for me emotionally.

> I am not here to complain about him, I am here because I am scared, in pain

> right now & need support and I have no one to talk to.

>

> Thanks to anyone who took the time to read this lengthy share.

>

> Blessings,

>

>

>

>

>

> _________________________________________________________________

> Join the world’s largest e-mail service with MSN Hotmail.

> http://www.hotmail.com

>

>

>

>

>

[Guest guest]

Hi a!

Thanks for writing and for all the helpful info!!

I did have my thyroid checked and my bone density was my feet, hips and

spine.

I do have access to a pool - I just joined a pool club with my son so we can

go swimming together. I have been reading on the internet about how helpful

swimming is with arthritis and right now it is the only exercise I could do

anyway. I am looking forward to going!

Blessings,

C.

>From: a <paula54@...>

>Reply-

> " " < >

>Subject: Re: [ ] Re: new member intro

>Date: Tue, 28 May 2002 16:32:26 -0400

>

>,

>Have you had your thyroid checked?

>Excess thyroid hormone will cause your bones to thin and weaken. When you

>had the test done to check your bone density, did they look specifically at

>your feet or just your hip and spine?

>I'm not sure of what bone in your feet broke, but here is a link describing

>a fractured foot in the same area of both feet caused by excess load:

>

>http://www.orthopedictechreview.com/issues/apr00/pg15.htm

>

>The bones of the feet are small and are easier to fracture. It's great

>that your bone density test came out so good, but if you have RA and it is

>affecting your feet, it could weaken the bones of the feet making your more

>prone to fracture.

>

>Can you get your appointment moved up? Call them and ask to be put on the

>cancellation list. It's to long to be in so much pain. I know how scary

>RA is, but it can be managed with proper meds. Sometimes it takes a while

>to find the right ones. If you have access to a pool, water therapy will

>keep the stress off of your joints but allow you to exercise. The pool is

>my salvation. Hope you feel better.

>a

>

>

>

>On 5/26/02 10:59 AM, " klc youlater " <castaway41@...> wrote:

>

> > Hi - I would like to introduce myself to the group.

> >

> > My name is , I am 42 yrs old. I am married and have a son with

> > significant special needs, which is why I dont work outside the home.

> >

> > My story in retrospect goes back about 5 yrs., although I just find out

>last

> > week that what I have been dealing with all this time is an arthritic

> > condition & believed to be rheumatoid arthritis. I am being sent to see

>a

> > rheumatologist on June 13th by my podiatrist, who tells me he believes I

> > have RA.

> >

> > Looking back about 5 yrs ago, I remember not being able to go for a

>short

> > car ride without being unable to move when it was time to get out of the

> > car. I was limping & sore all over. I felt like an elderly woman in my

>late

> > thirties. I remmeber my mother-in-law saying to me. " you are too young

>to

> > be like this " (probably the only thing we've ever agreed on! LOL!)

> >

> > I am obese and always have been, so I attributed this soreness to my

>lack of

> > being " in shape " . many times I began walking programs to only end up

> > getting bone spurs in my feet. That is when I first saw my podiatrist in

> > 1997 for bone spurs in both heels. I went for physical therapy then for

> > months and eventually they did go away. Meanwhile, I continued to be

>very

> > imobile after car rides, noticed I couldnt sit in a movie chair as my

>spine

> > was killing me with pain.

> >

> > Last sping, at this time, I broke both feet " without injury " . I had

>stress

> > fractures in the same bone on both feet at the same time. This ended up

>with

> > my being in two leg casts from the knee down for four months. I could

>not

> > drive, used a walker with the casts to get around, crawled on all fours

>up

> > the stairs to get my son off to school, etc. Eventually I had to hire a

> > cleaning person to come in until I got out of the casts. I cried when my

> > orhtopedic doctor told me both feet were fractured. I said, " what is

>wrong

> > with me, I didnt injure them? " He asked me if I ever heard of

>osteoporosis

> > and sent me to see an osteo specialist. I waited 4 months to get my

>appt. to

> > see him , all this time believing, as my orthopedic dr. did, that I had

> > osteoporosis. However, when I finally got to see him, he said my bones

>were

> > two standard deviations above the norm!! He looked at me and said, " can

>I

> > be quite honest with you? " I said of course. he said, " your weight is

> > breaking perfectly good bones. " Well, I know I am obese (250 lbs) but I

> > know many people much heavier than me who dont break their feet from

>their

> > weight. However, being scared at what he said, and he put it in writing,

>I

> > went ahead and had weight loss surgery just this April.

> >

> > Meanwhile waiting for the surgery, my feet were in SO much pain, I went

>to

> > see a different orthopedic doctor. I told him my feet hurt all over and

>have

> > for a year. In fact, when he asked me several times " where " they hurt

>and I

> > kept saying " all over " , he yelled at me and said, " I SAID WHERE!! " I

>was

> > only telling him the truth all over. - He took Xray's - sd they were

>fine &

> > told me to " walk it out. " He sent me on my way. So, I decided to start

> > walking again - immediately I developed another bone spur.

> >

> > I went back to my podiatrist a few weeks ago. By this time my foot hurt

>so

> > bad I cant even walk on it. He took Xrays and sd I developed a bone spur

>but

> > he was not sending me for physical therapy this time. I had told him

>about

> > my broken feet last year, my pain in my toes, etc. and he said I needed

>to

> > see a rheumatoid arthritis specialist.

> >

> > I didnt think too much about it except was dissapointed that I had no

>relief

> > in my foot. Since that visit a few weeks ago, my spine hurts, my right

>wrist

> > hurts and my right shoulder hurts. Terribly!

> >

> > The bad news is he had recommended I take NSAIDS, which I cannot take

> > because I just had a Lapband inserted around my stomach in April for my

> > weight loss surgery and those kind of meds will erode the Lapband!!

> >

> > So, I had the weight loss surgery on the advise of the osteospecialist

>who

> > told me my weight was breaking my bones, now my podiatrist tells me that

> > that is not the case and that these conditions are ALL RELATED!

> >

> > I got on the internet and starting reading about RA and became very

> > frightend and depressed. I have goals of doing all kinds of things when

>I

> > lost weight after my surgery & was fianlly in shape. I am more sore now

>than

> > I ever have been.

> >

> > Last night I layed in bed for 3 hrs. in extreme pain. I worried about my

> > future and how I will be able to care for my son with special needs. I

>went

> > to my husband & told him I REALLY needed to talk. He said, " I just

>started

> > watching this movie " He has never been able to be there for me

>emotionally.

> > I am not here to complain about him, I am here because I am scared, in

>pain

> > right now & need support and I have no one to talk to.

> >

> > Thanks to anyone who took the time to read this lengthy share.

> >

> > Blessings,

> >

> >

> >

> >

> >

> > _________________________________________________________________

> > Join the world’s largest e-mail service with MSN Hotmail.

> > http://www.hotmail.com

> >

> >

> >

> >

> >

[Guest guest]

,

We all mourn the loss of what we can¹t do. It¹s normal to be angry. Even

after many years of this disease, I go through mourning periods and have

bouts of anger. But in time we learn how to do things differently and find

ways to make things easier. I had a lot of guilt about the things I

couldn¹t do with my children, but when I look back I realize how many other

things I did such as reading, playing games and art projects. Maybe I

couldn¹t do many physical things, but I made up for it in other ways. I

know it is hard with a special needs child. On your good days you can do

more, and on the bad days you just have to do the best you can. It¹s not

your fault that you got sick, so you shouldn't be so hard on yourself.

When you get meds that help, you may be able to do gardening again. Don¹t

give up on the idea.

a

On 5/26/02 7:42 PM, " klc youlater " <castaway41@...> wrote:

> Hi Carol,

>

> Thanks so much for writing & welcoming me!

> It is hopeful to hear about the medications that are out and may be of help

> to me.

>

> You mentioned the adjustment period you have/are going thru - I am going

> thru some real guilt right now as I had promised my son when I lost my

> weight and got in shape after my weight loss surgery, we would bike ride

> together and go for walks,etc. This realy was my goal and my dream as I

> thought my aches were due to my weight. He has no friends being a child

> with special needs & he was really looking forward to this as much as I was.

> In my heart I feel like I have let him down BIG time, although

> intellectually I know it wasnt my plan to end up like this.

> I did just sign us up at a swim club so we can go swimming together though.

> So, it's just a change in the plans for now. That's the only way to look at

> it.

>

> I have always loved gardening & last year we bought a new home with a huge

> yard so my husband & I could garden together. He has recently planted his

> vegetable garden and I cant do anything I planned. I miss my flower

> gardening. I look at the yard and see what I had visioned not done and it

> feels depressing. But then I say to myself, thank you God that I can walk

> today. I have to keep an attittude of gratitude for what I can do, while at

> the same time allowing myself to go thru the process of adjustment as you

> have described.

>

> I have two weeks until I get to my first appt. with a rheumatologist. I cant

> wait as I have never been in so much pain on a continous basis for so long.

> My primary care physician set me up with an August appt. to see a

> rheumatologist and I cant even walk right now. I fired her, found my own new

> primary care physician and got an appt. in two weeks with a rheumatologist

> myself.

>

> I'm rambling - thanks for letting me vent.

>

> Blessings,

>

>

>

>

>> >From: " Carol " <carol@...>

>> >Reply-

>> >< >

>> >Subject: RE: [ ] Re: new member intro

>> >Date: Sun, 26 May 2002 16:24:47 -0400

>> >

>> >Hi , and welcome! I think you'll really enjoy this group. I've been

>> >here for a few months now, and have received a lot of valuable advice as

>> >well as support.

>> >

>> >It sounds like you've really been through an ordeal with your foot pain, as

>> >well as the pain you are having in various areas presently (which certainly

>> >sounds like RA to me!). I can understand your fear and depression at the

>> >thought of a diagnosis of RA, as I was diagnosed this past February. It

>> >has

>> >been a real adjustment. There are so many plans I've made for my life that

>> >I'm having to reevaluate. The good news is that there are more effective

>> >medications than there have ever been, although they're expensive. I'm

>> >certain that any RA veteran would agree that if there is a " good " time to

>> >have to be diagnosed with RA, this is it.

>> >

>> >I'm sorry your husband isn't being more supportive, that would certainly

>> >make it harder. My husband has been very supportive, but I worry that he

>> >will get fed up eventually. For that reason, I try to limit our

>> >conversations about my health issues. Although, when I'm in a flare, it

>> >really is the center of my universe. The pain is so bad you can't focus on

>> >much else. I've been told that the first year after diagnosis is the

>> >worst,

>> >because you don't have the disease under control. Keep your chin up.

>> >

>> >Hugs,

>> >

>> >Carol in FL

>> >

>> > [ ] Re: new member intro

>> >

>> >Hi - I would like to introduce myself to the group.

>> >

>> >My name is , I am 42 yrs old. I am married and have a son with

>> >significant special needs, which is why I dont work outside the home.

>> >

>> >My story in retrospect goes back about 5 yrs., although I just find out

>> >last

>> >week that what I have been dealing with all this time is an arthritic

>> >condition & believed to be rheumatoid arthritis. I am being sent to see a

>> >rheumatologist on June 13th by my podiatrist, who tells me he believes I

>> >have RA.

>> >

>> >Looking back about 5 yrs ago, I remember not being able to go for a short

>> >car ride without being unable to move when it was time to get out of the

>> >car. I was limping & sore all over. I felt like an elderly woman in my late

>> >thirties. I remmeber my mother-in-law saying to me. " you are too young to

>> >be like this " (probably the only thing we've ever agreed on! LOL!)

>> >

>> >I am obese and always have been, so I attributed this soreness to my lack

>> >of

>> >being " in shape " . many times I began walking programs to only end up

>> >getting bone spurs in my feet. That is when I first saw my podiatrist in

>> >1997 for bone spurs in both heels. I went for physical therapy then for

>> >months and eventually they did go away. Meanwhile, I continued to be very

>> >imobile after car rides, noticed I couldnt sit in a movie chair as my spine

>> >was killing me with pain.

>> >

>> >Last sping, at this time, I broke both feet " without injury " . I had stress

>> >fractures in the same bone on both feet at the same time. This ended up

>> >with

>> >my being in two leg casts from the knee down for four months. I could not

>> >drive, used a walker with the casts to get around, crawled on all fours up

>> >the stairs to get my son off to school, etc. Eventually I had to hire a

>> >cleaning person to come in until I got out of the casts. I cried when my

>> >orhtopedic doctor told me both feet were fractured. I said, " what is wrong

>> >with me, I didnt injure them? " He asked me if I ever heard of osteoporosis

>> >and sent me to see an osteo specialist. I waited 4 months to get my appt.

>> >to

>> >see him , all this time believing, as my orthopedic dr. did, that I had

>> >osteoporosis. However, when I finally got to see him, he said my bones were

>> >two standard deviations above the norm!! He looked at me and said, " can I

>> >be quite honest with you? " I said of course. he said, " your weight is

>> >breaking perfectly good bones. " Well, I know I am obese (250 lbs) but I

>> >know many people much heavier than me who dont break their feet from their

>> >weight. However, being scared at what he said, and he put it in writing, I

>> >went ahead and had weight loss surgery just this April.

>> >

>> >Meanwhile waiting for the surgery, my feet were in SO much pain, I went to

>> >see a different orthopedic doctor. I told him my feet hurt all over and

>> >have

>> >for a year. In fact, when he asked me several times " where " they hurt and I

>> >kept saying " all over " , he yelled at me and said, " I SAID WHERE!! " I was

>> >only telling him the truth all over. - He took Xray's - sd they were fine &

>> >told me to " walk it out. " He sent me on my way. So, I decided to start

>> >walking again - immediately I developed another bone spur.

>> >

>> >I went back to my podiatrist a few weeks ago. By this time my foot hurt so

>> >bad I cant even walk on it. He took Xrays and sd I developed a bone spur

>> >but

>> >he was not sending me for physical therapy this time. I had told him about

>> >my broken feet last year, my pain in my toes, etc. and he said I needed to

>> >see a rheumatoid arthritis specialist.

>> >

>> >I didnt think too much about it except was dissapointed that I had no

>> >relief

>> >in my foot. Since that visit a few weeks ago, my spine hurts, my right

>> >wrist

>> >hurts and my right shoulder hurts. Terribly!

>> >

>> >The bad news is he had recommended I take NSAIDS, which I cannot take

>> >because I just had a Lapband inserted around my stomach in April for my

>> >weight loss surgery and those kind of meds will erode the Lapband!!

>> >

>> >So, I had the weight loss surgery on the advise of the osteospecialist who

>> >told me my weight was breaking my bones, now my podiatrist tells me that

>> >that is not the case and that these conditions are ALL RELATED!

>> >

>> >I got on the internet and starting reading about RA and became very

>> >frightend and depressed. I have goals of doing all kinds of things when I

>> >lost weight after my surgery & was fianlly in shape. I am more sore now

>> >than

>> >I ever have been.

>> >

>> >Last night I layed in bed for 3 hrs. in extreme pain. I worried about my

>> >future and how I will be able to care for my son with special needs. I went

>> >to my husband & told him I REALLY needed to talk. He said, " I just started

>> >watching this movie " He has never been able to be there for me

>> >emotionally.

>> >I am not here to complain about him, I am here because I am scared, in pain

>> >right now & need support and I have no one to talk to.

>> >

>> >Thanks to anyone who took the time to read this lengthy share.

>> >

>> >Blessings,

>> >

>> >

>> >

>> >

>> >

>> >_________________________________________________________________

>> >Join the world's largest e-mail service with MSN Hotmail.

>> >http://www.hotmail.com

>> >

>> >

>> >

>> >

>> >

[Guest guest]

>>>>Hi Friends,

I am new to the group and would like to introduce myself.

I am a veterinarian/farmer/beef cattle raiser from eastern South

Dakota. I have just discovered the Weston A. Price Foundation and

his dietary ideas. They make sense to me.

Are there any recent studies on humans comparing Dr. Price's diet and

a modern diet with processed foods and vegetable oils?

Thanks for any comments.

Hi Dale,

welcome to the group

i doubt such a study has been done for a number of reasons, including the

fact that there is no such thing as a " Dr. Price diet " :-) The diets of the

14 isolated groups he studied varied in composition quite a bit. however,

there *were* some common characteristics he noted, which are listed here:

http://www.westonaprice.org/nutrition_guidelines/characteristics.html

Also, the WAPF doesn't have a lot of money, AFAIK, and since they don't

accept corporate funds, i'm guessing they might not have adequate funding

for such a project, even if they decided it was a good use of their funds.

What we DO have, to some extent, is the epidemiological evidence, although

imperfect (REALLY imperfect from a scientist's perspective, i imagine).

Price, and some other explorers/researchers found these groups to be in an

extraordinary state of health *until* they began replacing their native

foods with " the displacing foods of modern commerce " (white flour, white

sugar, processed oils and canned goods). As well, when you take a look at

the current Standard American Diet, which i think is composed primarily of

processed foods, and the current rate of chronic and degenerative diseases,

it gives food for thought, although there are obvioiusly other variables

that affect health. this is one reason i think looking at the folks that

price studied in the isolated groups, who were displacing their native diet

with processed foods, is a better guage of the *food's* affect on their

health, since all other variables seemed to be the same (lifestyle,

environment, etc).

my other thought is, do we really need a study to tell us that a diet

composed of 25% white sugar, with the bulk being other processed foods, is

not as healthy as a diet that doesn't include any sugar, and is composed of

fresh (or properly aged) whole foods? I just used 25% because Price writes

that the american diet of his day was already 25% sugar (which

presumably*displaced* calories from other foods, perhaps more wholesome

ones?).

I guess I'd rather see some of the details of price's findings go under some

rigorous scrutiny as opposed to a study that compares the effects of a

processed foods diet to a traditional whole food diet. Like, what were the

exact components of the american diet of his day that he did nutrient

analysis on, and determined that the native diets he studied had 10x the fat

soluble vits. and 4x the water soluble ones? Was the equipment he used

accurate at measuring such things? and so on.

apparently there are boxes of his research 'laying about' the Price

Pottenger Foundation, which no one's yet read. I think it was mentioned that

there's even an unpublished book in there. maybe some of that stuff can fill

in the blanks...

Suze Fisher

Lapdog Design, Inc.

Web Design & Development

http://members.bellatlantic.net/~vze3shjg/

mailto:s.fisher22@...

[Guest guest]

hi dale welcome to the board

in regards to diet and processed foods i seem to find all of todays

studies are monetarily biased and anything that comes from

these " tests " nowadays are not actually after truth.

( it has been todl that if the " truth " comes out USA will go broke

via many court cases taking place by the mislead public)

but hey i could be wrong

> Hi Friends,

> I am new to the group and would like to introduce myself.

> I am a veterinarian/farmer/beef cattle raiser from eastern South

> Dakota. I have just discovered the Weston A. Price Foundation and

> his dietary ideas. They make sense to me.

> Are there any recent studies on humans comparing Dr. Price's diet

and

> a modern diet with processed foods and vegetable oils?

> Thanks for any comments.

> Dale Miskimins

> Elkton, SD

[Guest guest]

Hi ,

Welcome to the list.

Elainie

[Guest guest]

Hi Ivy and welcome to the group. It's a wonderful group of friendly, caring

people who also have a good sense of humor.

I'm Dix, married for 34 years to Dan with 7 grown children adn 3

grandchildren. We live in Illinois about 30 miles south of Chicago.

My sister has poly rheum. What helped her the most was going to physical

therapy. She went for several months, and when they decided it was time to

stop, she was almost in remission, and does her exercises daily, and is feeling

good.

Sometimes it takes cortisone a while to work. You also need to be on an

appropriate dose. If you take cortisone, you should also take Vitamin D,

calcium, and get an Rx for Fosamax - it helps prevents bones loss from the

cortisone.

I've been looking for a gluten-free diet also. If I don't find one soon,

I'll write my mom, who's a retired hospital dietician/nutritionist. She's 85,

but her mind is sharp as a tack, especially about food!

I think getting a 2nd opinion is a great idea. Some of the auto-immune

diseases are difficult to pinpoint when they begin.

I hope you find what you're looking for here. From what I've seen so far,

you will.

Dix

[ ] New Member Intro

Hi Everyone-

I just joined your group. My name is Ivy, I'm a 43 year old married female in

Arizona.

I've been recently diagnosed with polymyalgia rheumatica and started cortisone

therapy about 2 weeks ago. I suffer from severe leg and foot cramps 24/7 and

it's excruciating. The cortisone doesn't seem to be helping much except for

making me want to eat everything in site. I get tired very very easily and

it's all so frustrating.

I'm not 100% sure they have the diagnosis right and have an appt at the end of

August to consult with a second rheumatologist.

Is there anyone else out there with this? I'd love to chat and get some more

info and make some new friends here.

Also, I'm most likely going to be moving to the Dallas, Texas area in the fall

and if anyone has a recommendation on some good doctors there (general

practitioner as well as rheumatologist) I'd love to know.

Oh...one last thing...I read that a wheat gluten allergy can cause alot of the

autoimmune diseases particularly those related to the rheumatoid family. I've

recently attempted to start a gluten free diet (it's really hard!) so if

anyone has any info on that I'd be interested or I can send anyone the links I

have.

Thanks for having me in your group...

Stay well and pain free all!

Hugs-

Ivy

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