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,

I also had the thought while reading your post that many people only

wish their greatest concern about vacation was the decision of

whether to rent a house or a condo. Sounds as though you husband is

a lucky man to have you. I think one of the other that responded to

you may be right about men and their reactions to things they can't

control. Your being the major bread winner and ill at the same time

is probably an emotional and psychological overload for you husband.

I am sure that if you can make him see this illness as a real thing

he will come around to realizing that you need his help.

But that is all a side note really. The main reason I am writing you

is to suggest that you have your thyroid check. Shortness of breath

is actually a symptom of thyroid problems. And there is a type of

autoimmune thyroid disease that could be reacting to your PA or visa

versa.

Pamela

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Dear Fran, I have learned from the best...YOU!!! I have shared those tips with

so many people and they seem to impact everyone I know that reads them. Belated

birthday wishes, and may I say, I am delighted you had some quality time with

your girls!!

be well Fran...

love

annie and the pugherd

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In a message dated 7/1/2004 5:48:39 AM Eastern Standard Time,

heatherfitz@... writes:

Finally, I started with my first injections of Enbrel

yesterday...keep you fingers crossed!

,

by the way, love the name. It is my daughter's name. Good luck with the

enbrel. Most people are very happy with it. I am taking Humira and it is

helping somewhat. You sound like you have great job. What type of work do

you

do? Hopefully your husband will come around. I used to forward my husband

some postings for this board that I thought would help him make things sink

in more.

Janet

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Dear Annie, Thank you for the kind words. I wish I could take credit for

the chronic pain tips, but I only found them one night on the Internet and

there was no author listed. I'm glad they have helped you and when I re

read them I'm always amazed at how many of them relate to me that day.

Thanks for the birthday wishes and it was a great day for me. I'm trying my

best to get well and it helps finding the courage to go on from all of you

in this group. Love, Fran

Re: [ ] need some advice

Dear Fran, I have learned from the best...YOU!!! I have shared those tips

with so many people and they seem to impact everyone I know that reads them.

Belated birthday wishes, and may I say, I am delighted you had some quality

time with your girls!!

be well Fran...

love

annie and the pugherd

[

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Guest guest

It's ironic actually...I work in pharmacutical research (Market not

lab). I rarely tell the physicians this since I have found that

they then either think I am trying to second guess them or talk way

over my head. Unfortunatly, I also get to hear first hand what the

docs think of various drugs - sometimes things they would never tell

us as a patient.

>

> In a message dated 7/1/2004 5:48:39 AM Eastern Standard Time,

> heatherfitz@r... writes:

>

> Finally, I started with my first injections of Enbrel

> yesterday...keep you fingers crossed!

>

>

>

> ,

>

> by the way, love the name. It is my daughter's name. Good luck

with the

> enbrel. Most people are very happy with it. I am taking Humira

and it is

> helping somewhat. You sound like you have great job. What type

of work do you

> do? Hopefully your husband will come around. I used to forward

my husband

> some postings for this board that I thought would help him make

things sink

> in more.

> Janet

>

>

>

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  • 5 weeks later...
Guest guest

I am not sure if it is always the case but in Spanish soy is soya.

> My 6 year old daughter has been on ZP, AFP & NF for 5 weeks now,

> apart from her being a little hyper during the day (I give her

epsom

> salts in a cream for this) I have not seen any improvement in her

> behaviour. I wonder if I am doing something wrong, or the enzymes

> are not the correct ones for her. I give her mostly the ZP & NF

> because she is a big organic rice milk drinker. She hardly eats

but

> what she does, I have it covered with the ZP, AFP & NF. I give her

> one capsule each of ZP & NF with her organic rice milk (on your

> advice). When she does eat food I give her just capsule of each.

>

> My daughter had the PICA test done and was found to have high lead

> and low iron. I give her SNT, Zinc, Vit's C & E, Calcium, Bio Kult

> (Probiotic) & Eye-Q (fish oil)and TMG. I also rub Epsom Salts on

> her 3-4 x per day. Her night sleeping has improved (she often woke

> up several times during the night, or woke up at 3am and stayed

away

> for the rest of the night). Unfortunately she is still eating non-

> food items (she especially likes the cement between bricks!!).

>

> I can honestly say, that behaviour wise she has not changed -

except

> she appears more hyper during the day light hours. She isn't

> talking anymore then she used to, and she is still head banging.

> She hasn't had any bad reactions to the enzymes though, (no stomach

> pains or terrible poop). As far as i know she has never suffered

> with yeast/bacteria, never really been on antibiotics (just

> occasionally maybe once a year if that). No ear infections. In

> fact she is pretty much in good health considering she hardly eats,

> and gets alot of non-food items in her system.

>

> Finally, I have just started to use non-fluoride toothpaste

(started

> 2 days ago) and I have started to give her filtered water (again 2

> days ago). She isn't on the gf/cf diet or any other diet because

> she hardly eats (smells everything, before it even goes into her

> mouth......if it ever gets into her mouth!!!).

>

> Can you tell me also, is soy the same as soya? (We don't use this

> product, but have noticed it alot and wondered if soy is also known

> as soya).

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> My 6 year old daughter has been on ZP, AFP & NF for 5 weeks now,

> apart from her being a little hyper during the day (I give her epsom

> salts in a cream for this) I have not seen any improvement in her

> behaviour.

For my son, the enzymes did not address all foods. You might have

that same problem with your child.

> because she is a big organic rice milk drinker.

My son did not tolerate rice, even with enzymes. Try removing it [yes

I know, probably not an easy thing to do].

> My daughter had the PICA test done and was found to have high lead

> and low iron. I give her SNT, Zinc, Vit's C & E, Calcium, Bio Kult

> (Probiotic) & Eye-Q (fish oil)and TMG.

SNT is notorious for causing eating problems. Try removing it, or at

least reducing it to about 1/4 what you are currently giving her.

>>Unfortunately she is still eating non-

> food items (she especially likes the cement between bricks!!).

This can be zinc deficiency, but for my #3, it meant he was eating a

food or supplement he did not tolerate, or he had a yeast issue.

> I can honestly say, that behaviour wise she has not changed - except

> she appears more hyper during the day light hours.

Rice made my son very hyper and stimmy, even with enzymes. My son did

not tolerate artificials, rice, corn, and luteins, even with enzymes.

Good luck.

Dana

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  • 2 months later...

Dear Annie, Well I have the guttate form of psoriasis, at least my

rheumatologist says I do. (I've seen two dermatologists who have told me it

is a rare form of skin damage. Personally, I believe my arthritis doctor

since I have every other sign of it pointing to PA.

Anyway, normally my spots are about the size of a cigarette burn. Some are

smaller and very few are larger. I have had them fill with fluid only once,

thank goodness. They didn't change color, but did get really red...since

they are normally red I didn't think that was a big deal. They would itch

and hurt at the same time and when they did drain it normally was a clear

fluid.

It drove me nuts and like I said has only happened one time.

If yours doesn't go away or continues to drain, I would go to the doctor and

get it checked out. I was really ready to go with my situation and it

basically just seemed to clear up on it's own. With all the stories of skin

cancer, it's really important to rule everything out. I'm sure it's only

bad PA, but this way you don't or won't have to worry.

Well I'd say, I know what you are going through, but every one is different.

So I won't Just go to the doctor, the dermatologist just love to hear about

rashes and things like that...lol. Take care and I hope you are feeling

better. Love, Fran

[ ] need some advice

Hello, usually a lurker here, but I have a question..kind of an

indelicate one!! sorry in advance!

I have basic plaque P on my knees and elbows and a little on my

back, and scalp, but I also have the kind that comes up as a bump on

my skin with a little head to it...not sure if that makes it Guttate

or Pustular. Anyway, got a couple of these all in the same area. It

was sooooooo sore! I am used to the first eruption day being sore,

then the the " head " breaks open, relieves the pressure and all it

goes away in a few days. HOWEVER, this time I have had a bit more of

an issue. Apparantly there were 3-4 of these in one area. The small

lumps looked like they were turning black and blue under my skin.

Finally I put a hot wash rag on the area, needless to say, the

draining began. I will NOT describe it!!!

Has anybody ever had anything like this??? I feel like I am turning

into a freak of nature.

Any advice would be most appreciated.

thanks

annie and the pugherd

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Dear Annie,

Not sure if this helps and I've refrained from writing because I'm not sure it's

the same ~ and I don't recall much of the technical stuff, but it sounds soooo

similar...

My daughter (a few years back) suffered from something very similar. It started

in her armpits and by the time we finally figured out what to do, it was all

down her sides and on her arms and legs. It would get better in the winter

(very dry here) and much worse in the summer.

She had bumps that almost looked like pimples, but the liquid was clear and she

would often get a red circle around the bumps the size of a quarter or bigger

sometimes ~ and it semed they would mutliply in a certain area.

Anyway, the diagnosis finally was a form of infected acne, but this form isn't

the same as what is on the face, but they used the same medicine I had for acne

(I'm one of those lucky 41 year olds that still get cystic acne now and then ~

especailly now ~ seems tied either to the med's or the PA), anyway, it cleared

it up within a week or so!

Good Luck....

From: pugbunch13 [mailto:annie@...]

Sent: Monday, October 11, 2004 2:55 PM

Subject: [ ] need some advice

Hello, usually a lurker here, but I have a question..kind of an

indelicate one!! sorry in advance!

I have basic plaque P on my knees and elbows and a little on my

back, and scalp, but I also have the kind that comes up as a bump on

my skin with a little head to it...not sure if that makes it Guttate

or Pustular. Anyway, got a couple of these all in the same area. It

was sooooooo sore! I am used to the first eruption day being sore,

then the the " head " breaks open, relieves the pressure and all it

goes away in a few days. HOWEVER, this time I have had a bit more of

an issue. Apparantly there were 3-4 of these in one area. The small

lumps looked like they were turning black and blue under my skin.

Finally I put a hot wash rag on the area, needless to say, the

draining began. I will NOT describe it!!!

Has anybody ever had anything like this??? I feel like I am turning

into a freak of nature.

Any advice would be most appreciated.

thanks

annie and the pugherd

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  • 4 weeks later...

Hi April, Dave here. Just wanted to let you know that once I started taking

my Whey protein, it really helped to curb cravings. If you have already

started the Whey then we will mark it up as, we are going to have a craving

every

now and then. Good luck

God Bless,

Dave (636) 240 - 0663

MGB 03-04-03, Dr H.

Changing the world

one soul at a time.

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I drink Soyfee some times - it's a good coffe alternative - you can order it on

line or some health food stores carry it. It's great for you and tastes like

coffee - it's pretty good - I drink it with low carb hazelnut creamer -

yummy!!!! They also had a tanic free tea at the MGB meet and greet in NC before

the picnic- I'm not sure what it's called but would like to know - I really

could go for some tea right now and if it's safe for us - I'd like to taste it.

If anyone knows what I'm talking about - please let me know - my local health

food store would like to order some if I just had the name and compnay that

makes it.

Hope this helps!

Michele S ()

8/3/04

390/323/???

Dr. H & Raj. in FL

Don't forget to RSVP for the MidWest MGB Holiday Party in Jefferson City, MO!!!

e-me if interested! chels_70@... :-)

April <thegreatwolves@...> wrote:

Hey guys. I was just wondering what I can have for a drink. It's

been 4 months and I haven't had coffee and I don't crave it either.

But lately I have been wanting a hot drink and I don't like hot

chocolate and I now we are not to have tea or coffee so I was

wondering what else there was. Any advice would be appreciated.

Thanks.

April Ontario Canada

06-30-04

(=';'=)

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Hi, I have a cup of hot chicken broth every morning when everyone else

at the office is having coffee. I actually look forward to it each morning.

I am having a hot drink and also getting some of the sodium for the day.

Try it--I think you'll like it. I also found some " acid tamer " that I use

for the occasional cup of coffee that I have.

Good Luck, S.

need some advice

>

>

> Hey guys. I was just wondering what I can have for a drink. It's

> been 4 months and I haven't had coffee and I don't crave it either.

> But lately I have been wanting a hot drink and I don't like hot

> chocolate and I now we are not to have tea or coffee so I was

> wondering what else there was. Any advice would be appreciated.

> Thanks.

>

> April Ontario Canada

> 06-30-04

> (=';'=)

>

>

>

>

>

>

>

>

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My only craving is for a hot drink i was trying to figure out what i could have

that was hot besides chocolate becasue i dont like the hot chocolate. I dont

miss the coffee or pop. i just miss something hot. lol I am taking my whey

protein already ahve been for months now.

April Ontario Canada.

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Hot apple cider, apple juice with spices.

Monroe

MGB 7/19/2002..Dr. Rutledge

285/125

CLOS-High Point

704-682-0260 (cell)

336-841-0326 (office)

npm@...

www.clos.net

need some advice

Hey guys. I was just wondering what I can have for a drink. It's

been 4 months and I haven't had coffee and I don't crave it either.

But lately I have been wanting a hot drink and I don't like hot

chocolate and I now we are not to have tea or coffee so I was

wondering what else there was. Any advice would be appreciated.

Thanks.

April Ontario Canada

06-30-04

(=';'=)

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A combination of orange juice, pineapple juice and cranberry juice with

cinnamon sticks is also good hot.

Monroe

MGB 7/19/2002..Dr. Rutledge

285/125

CLOS-High Point

704-682-0260 (cell)

336-841-0326 (office)

npm@...

www.clos.net

Re: Re: need some advice

My only craving is for a hot drink i was trying to figure out what i

could have that was hot besides chocolate becasue i dont like the hot

chocolate. I dont miss the coffee or pop. i just miss something hot.

lol I am taking my whey protein already ahve been for months now.

April Ontario Canada.

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Was just wondering what the 240 - 0663 means?

Sorry to be feeling kind of dumb here?

Thanks... since your surgery was around the same time as mine I find it

interesting...

thanks for your reply,

Barb/ n/e oHIo -107 lbs., thank you God!

Dr. R (the best)

>>> <iwitness4u@...> 11/06/04 08:32PM >>>

Hi April, Dave here. Just wanted to let you know that once I started taking

my Whey protein, it really helped to curb cravings. If you have already

started the Whey then we will mark it up as, we are going to have a craving

every

now and then. Good luck

God Bless,

Dave (636) 240 - 0663

MGB 03-04-03, Dr H.

Changing the world

one soul at a time.

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That's Dave's phone number.

Re: need some advice

>

> Was just wondering what the 240 - 0663 means?

> Sorry to be feeling kind of dumb here?

> Thanks... since your surgery was around the same time as mine I find it

> interesting...

>

> thanks for your reply,

> Barb/ n/e oHIo -107 lbs., thank you God!

> Dr. R (the best)

>

>>>> <iwitness4u@...> 11/06/04 08:32PM >>>

>

> Hi April, Dave here. Just wanted to let you know that once I started

> taking

> my Whey protein, it really helped to curb cravings. If you have already

> started the Whey then we will mark it up as, we are going to have a

> craving every

> now and then. Good luck

>

> God Bless,

> Dave (636) 240 - 0663

> MGB 03-04-03, Dr H.

>

> Changing the world

> one soul at a time.

>

>

>

>

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isn't that his phone number?

cathy s

> Was just wondering what the 240 - 0663 means?

> Sorry to be feeling kind of dumb here?

> Thanks... since your surgery was around the same time as mine I

find it interesting...

>

> thanks for your reply,

> Barb/ n/e oHIo -107 lbs., thank you God!

> Dr. R (the best)

>

> >>> <iwitness4u@a...> 11/06/04 08:32PM >>>

>

> Hi April, Dave here. Just wanted to let you know that once I

started taking

> my Whey protein, it really helped to curb cravings. If you have

already

> started the Whey then we will mark it up as, we are going to have

a craving every

> now and then. Good luck

>

> God Bless,

> Dave (636) 240 - 0663

> MGB 03-04-03, Dr H.

>

> Changing the world

> one soul at a time.

>

>

>

>

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Hot apple cider is yummy on a cold winter night!! And you can have all you

can stand ;-)

Kellie in OKC

12-19-03

>From: " April " <thegreatwolves@...>

>Reply-

>

>Subject: need some advice

>Date: Sun, 07 Nov 2004 00:36:56 -0000

>

>

>Hey guys. I was just wondering what I can have for a drink. It's

>been 4 months and I haven't had coffee and I don't crave it either.

>But lately I have been wanting a hot drink and I don't like hot

>chocolate and I now we are not to have tea or coffee so I was

>wondering what else there was. Any advice would be appreciated.

>Thanks.

>

>April Ontario Canada

>06-30-04

>(=';'=)

>

>

>

_________________________________________________________________

Is your PC infected? Get a FREE online computer virus scan from McAfee®

Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

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  • 4 months later...
Guest guest

Welcome ,

I'm sorry about your dx, but glad you have found the right place to

be for support. What type of meds has your doctor put you on? It is

hard for the family to take all this in, some have no clue what RA is.

With your Mom knowing what it is, and how it affected her Dad I can

see how devastating it will be for her. I can't really give any

advice, because I don't know her, know what I mean? But, maybe she

could go with you to your rheumy, and let him talk to her about all

the new meds, and what your options are.

We mother's always worry about our children you can't stop that. It

might take awhile for her to understand it all, but it will be great

that she is right by your side in what you go through.

Good luck, and let us know how it goes, will be thinking of you, Tawny

--- In , " dianaenxing " <dianaenxing@y...>

wrote:

>

>

> Okay, so I've been officially diagnosed for almost 2 weeks now and

> still cannot figure out how to tell my parents. I think my dad will

> be okay with it once I tell him how optimistic my rheumatologist

has

> been. My mom, on the other hand, has always been a worrier. Her dad

> had RA like 25 years ago when the medicines and other advances in

> the disease had not been made. He passed away 20 years ago and all

> she can remember were the gold shots he received and how he had to

> wear slippers all the time because of his foot pain. My doctor says

> that it will not be like that for me. I guess my question for which

> I'm seeking advice is---how do I tell her so that it doesn't come

> off sounding like a horrible thing? She's going to think the worst

> right away by just hearing the word 'rheumatoid.' I mean, this was

> the same woman who cried when they told me I didn't have RA a year

> ago. (of course, now we know the disease hadn't taken shape then) I

> just need a way to tell her gently and to let her know that I'm

> going to be all right. Any advice on talking to family would be a

> HUGE help! Thanks, everyone.

>

> E.

> New Orleans, LA

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Guest guest

Welcome ,

I'm sorry about your dx, but glad you have found the right place to

be for support. What type of meds has your doctor put you on? It is

hard for the family to take all this in, some have no clue what RA is.

With your Mom knowing what it is, and how it affected her Dad I can

see how devastating it will be for her. I can't really give any

advice, because I don't know her, know what I mean? But, maybe she

could go with you to your rheumy, and let him talk to her about all

the new meds, and what your options are.

We mother's always worry about our children you can't stop that. It

might take awhile for her to understand it all, but it will be great

that she is right by your side in what you go through.

Good luck, and let us know how it goes, will be thinking of you, Tawny

>

>

> Okay, so I've been officially diagnosed for almost 2 weeks now and

> still cannot figure out how to tell my parents. I think my dad will

> be okay with it once I tell him how optimistic my rheumatologist

has

> been. My mom, on the other hand, has always been a worrier. Her dad

> had RA like 25 years ago when the medicines and other advances in

> the disease had not been made. He passed away 20 years ago and all

> she can remember were the gold shots he received and how he had to

> wear slippers all the time because of his foot pain. My doctor says

> that it will not be like that for me. I guess my question for which

> I'm seeking advice is---how do I tell her so that it doesn't come

> off sounding like a horrible thing? She's going to think the worst

> right away by just hearing the word 'rheumatoid.' I mean, this was

> the same woman who cried when they told me I didn't have RA a year

> ago. (of course, now we know the disease hadn't taken shape then) I

> just need a way to tell her gently and to let her know that I'm

> going to be all right. Any advice on talking to family would be a

> HUGE help! Thanks, everyone.

>

> E.

> New Orleans, LA

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Guest guest

, this will be a hard thing to do, I'm sure. All I know to do is

just explain to her that things have changed since her dad had RA. New

medications can prevent the damage to the joints that he probably had.

But this is a two-edged sword. At least you have someone who will

understand what you are going through with RA. Many people have no one

with empathy for them. " But you don't look sick " is often heard. You

will be able to talk to your mother about your RA, and she won't have

that attitude.

Sue

On Friday, March 11, 2005, at 10:19 PM, dianaenxing wrote:

>

> Okay, so I've been officially diagnosed for almost 2 weeks now and

> still cannot figure out how to tell my parents. I think my dad will

> be okay with it once I tell him how optimistic my rheumatologist has

> been. My mom, on the other hand, has always been a worrier. Her dad

> had RA like 25 years ago when the medicines and other advances in

> the disease had not been made.

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Guest guest

, this will be a hard thing to do, I'm sure. All I know to do is

just explain to her that things have changed since her dad had RA. New

medications can prevent the damage to the joints that he probably had.

But this is a two-edged sword. At least you have someone who will

understand what you are going through with RA. Many people have no one

with empathy for them. " But you don't look sick " is often heard. You

will be able to talk to your mother about your RA, and she won't have

that attitude.

Sue

On Friday, March 11, 2005, at 10:19 PM, dianaenxing wrote:

>

> Okay, so I've been officially diagnosed for almost 2 weeks now and

> still cannot figure out how to tell my parents. I think my dad will

> be okay with it once I tell him how optimistic my rheumatologist has

> been. My mom, on the other hand, has always been a worrier. Her dad

> had RA like 25 years ago when the medicines and other advances in

> the disease had not been made.

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