Help!

[Guest guest]

In a message dated 10/10/2001 10:59:12 PM Eastern Daylight Time, bj.howie@... writes:

I know that there are people here on the list who have Graves but are in remission. My question is: How long were you on your antithyroid meds before going into a remission?

Dear Jen,

Don't be afraid of a diagnosis of Graves, it means nothing. I was diagnosed with Graves, was on ATDs and beta blockers for a few months, weaned myself off, and have been fine for over 4 years now. I consider myself cured, not in "remission," and have my blood levels checked once a year. (Of course, if symptoms were to return, I would not need blood level tests, as I would recognize them myself and adjust my supplements and diet accordingly.)

Lots of women get Graves after hormone fluctuations such as after pregnancy, or in peri-menopause. I think it's quite common, actually, and if caught early and addressed with ATDs, beta blockers, diet and supplements, I believe it can be reversed quite quickly. The doctors like to prolong the disease process (I guess to make more money), by either encouraging RAI (which makes you sicker and sicker for life), or by keeping patients on high doses of ATDs for long periods of time until they are really good and hypo. So, take the meds, take the nutrition and supplement advice from iThyroid, and get well sooner rather than later!

Best,

AntJoan

[Guest guest]

Thank you for this message, AntJoan. This helps me, too. My new endo wants to keep me on ATDs longer than I had thought would be necessary since I am hypo now. My sister was weaned from the high of 63 per day (the endo says this is the highest he has ever heard of) to 30 and from 30 down to almost nothing very quickly, 25 years ago. She has been in remission for over 25 years now, but is tested 2 x year. So, here I had been worried about weaning from 6 pills a day to almost nothing in a month, and she went from 30 to nothing very very quickly. She did say she fluctuated lots, at first, with her blood tests.

Arlene in CA

Re: help!In a message dated 10/10/2001 10:59:12 PM Eastern Daylight Time, bj.howie@... writes:

I know that there are people here on the list who have Graves but are in remission. My question is: How long were you on your antithyroid meds before going into a remission? Dear Jen, Don't be afraid of a diagnosis of Graves, it means nothing. I was diagnosed with Graves, was on ATDs and beta blockers for a few months, weaned myself off, and have been fine for over 4 years now. I consider myself cured, not in " remission, " and have my blood levels checked once a year. (Of course, if symptoms were to return, I would not need blood level tests, as I would recognize them myself and adjust my supplements and diet accordingly.) Lots of women get Graves after hormone fluctuations such as after pregnancy, or in peri-menopause. I think it's quite common, actually, and if caught early and addressed with ATDs, beta blockers, diet and supplements, I believe it can be reversed quite quickly. The doctors like to prolong the disease process (I guess to make more money), by either encouraging RAI (which makes you sicker and sicker for life), or by keeping patients on high doses of ATDs for long periods of time until they are really good and hypo. So, take the meds, take the nutrition and supplement advice from iThyroid, and get well sooner rather than later! Best, AntJoan

[Guest guest]

OHHHHHHHHH! how I know the feeling we just got a hot tub (thanks to Pops (G)

I have a moist heat heating pad (hows that for redundant?) I also bought a parrafin bath. I have that for 6 years............before you could buy them at Walgreens <G> Most joints can fit........well...not your hips (G) I've used it on my hands, feet, elbows. The nice part is It helps the pain & leaves my horribly dry skin looking a bit better.

I also meditate & use relaxation tapes & techniques. I am so happy I learned how to do it (so I could teach it)! when I got sick it's the one thing that gets me past the worst pain days.

Gentle hugs

Judie

[Guest guest]

Im having a terrible time today. Have been off prednisone for 2

months and the weather is changing its below freezing with the wind

chill today and EVERY JOINT is aching like a tooth ache! Asprin or

ibuprofen isnt helping. Over the last 3 years this is my first time

to go into winter with out prednisone....I even have shooting pain in

my toes... Sorry to wine. Any suggestions? Im going to go crawl in

the hot tub and hope I am able to crawl out before I prune. Thanks

for the ear...

[Guest guest]

Ahhh gee Patty...really sorry for your cold spell going through your body! Have you ever tried a heating blanket? I personally don't like them, but when I am on the couch, they help!

debby

[ ] re: help!

Im having a terrible time today. Have been off prednisone for 2 months and the weather is changing its below freezing with the wind chill today and EVERY JOINT is aching like a tooth ache! Asprin or ibuprofen isnt helping. Over the last 3 years this is my first time to go into winter with out prednisone....I even have shooting pain in my toes... Sorry to wine. Any suggestions? Im going to go crawl in the hot tub and hope I am able to crawl out before I prune. Thanks for the ear...

[Guest guest]

Patty,

See if your doctor will order some hydocodone (Vicodan) for you. I also get

terrible aches and pains when weather is bad. That is what I take. It is

addictive, but since I take it so seldomly it is ok.

Shireen

>From: pattyeady@...

>Reply-

>

>Subject: [ ] re: help!

>Date: Thu, 11 Oct 2001 21:08:46 -0000

>

>Im having a terrible time today. Have been off prednisone for 2

>months and the weather is changing its below freezing with the wind

>chill today and EVERY JOINT is aching like a tooth ache! Asprin or

>ibuprofen isnt helping. Over the last 3 years this is my first time

>to go into winter with out prednisone....I even have shooting pain in

>my toes... Sorry to wine. Any suggestions? Im going to go crawl in

>the hot tub and hope I am able to crawl out before I prune. Thanks

>for the ear...

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi Jen,

Everyone is different. I was on meds (PTU) for 4 years and eventually weaned off slowly. I've been off meds since January and feel fine. Please don't compare yourself to others here. Take your meds, avoid RAI, reduce the stress in your life, ask questions, take supplements and read Elaine's and 's websites for additional info. It takes time so give yourself a while to heal, take care, Mona

Re: help!

In a message dated 10/10/2001 10:59:12 PM Eastern Daylight Time, bj.howie@... writes:

I know that there are people here on the list who have Graves but are in remission. My question is: How long were you on your antithyroid meds before going into a remission? Dear Jen, Don't be afraid of a diagnosis of Graves, it means nothing. I was diagnosed with Graves, was on ATDs and beta blockers for a few months, weaned myself off, and have been fine for over 4 years now. I consider myself cured, not in "remission," and have my blood levels checked once a year. (Of course, if symptoms were to return, I would not need blood level tests, as I would recognize them myself and adjust my supplements and diet accordingly.) Lots of women get Graves after hormone fluctuations such as after pregnancy, or in peri-menopause. I think it's quite common, actually, and if caught early and addressed with ATDs, beta blockers, diet and supplements, I believe it can be reversed quite quickly. The doctors like to prolong the disease process (I guess to make more money), by either encouraging RAI (which makes you sicker and sicker for life), or by keeping patients on high doses of ATDs for long periods of time until they are really good and hypo. So, take the meds, take the nutrition and supplement advice from iThyroid, and get well sooner rather than later! Best, AntJoan

[Guest guest]

Hi Jen,

I was also told that doing RAI would get me off antithryoid meds too. However, they fail to tell you you'll be on hypo meds for the rest of your life. Avoid RAI at all cost. You are SO wise to be taking your husband. Make sure you let him know how bad RAI is before you go to the docs. Provide your hubby with as much info about hyperthyroidism as possible. There is no easy overnight fix - it takes time and patience.

Personally, I think stopping at 100mg cold turkey is too fast. The next step should be 50mg/day. You need to take the meds every day. I went from 2 PTU/day to one/day to 1/2 then finally 1/4. It sounds silly but my doc wanted to be absolutely sure. He's from Europe where they are much more cautious - he has never mentioned RAI to me. In fact, at my last visit he feels very confident I won't have future problems. Nothing in life is guaranteed - I just try to stay healthy.

Reducing stress and taking supplements, getting enough rest (very important), and reading Elaine and 's bulletin board will help.

After I get my blood drawn I wait a few days then call the docs office and ask for the results. I tell them the doc told me to because I'm just getting the blood tests without coming in for a visit. They always give me the results. For a while I was calling the lab and pretended to be the docs office.....eventually got caught....hahahha

Is there any way you can go to a different lab or doctor? You might have your hubby ask the doc why it takes so long to get the test results when it only takes a day or so to do the test. One more thing......congrats on your new baby. However, if you have RAI there is no guarantee you'll be able to have children in the future. There's a website called "atomic women" I think that talks about RAI. I'll try to find it for you.

I was on meds for 4 years then went off all meds in January, still in remission. Please keep asking questinos, the more you ask, the better off you are protecting yourself, take care, Mona

Re: help!

Hi Mona,

I really liked the idea of taking a friend or relative with you when you go in to see the doctor or endo. I have only seen my endo once and I have an appointment next month. I must travel two hours for a 15 min appointment and it doesn't seem worth it as the last time, I came out of his office feeling more frustrated and let down. I didn't expect him to cure me but really, these doctors really seem to want to push having the RAI treatment. I had an antibody test done on Aug 8th and I STILL don't have the results back. Does anyone in Canada who is reading this remember having a similar problem? I am in the middle of the country and apparently my blood sample had to be sent to Toronto but really, two months, I am anxious to know the results. I see my regular doctor every two weeks and she never has the stupid test results. She calls the provincial lab every now and again to see if they are there but no luck! Anyway, I've gotten off topic here, I just wanted to say that when I see this endo next month, I WILL be taking my husband in with me because that way two heads will be hearing the answers to my questions and we may remember more that way. I am still confused by all the TSH and T3 and T4 numbers the doctor keeps rambling about!

On a positive note, I recently found out I should be able to stop taking PTU very soon. I've been on various dosages of PTU since the middle of July. Apparently now my blood tests that I have done every two weeks are coming back saying my TSH levels are very high so I guess I shouldn't be trying to suppress it anymore. That is good news. My doctor says my hyperT may have been a result of pregnancy and breastfeeding after all. And even though like someone else on this list mentioned, (I think Elaine) doctors would rather us think that all hyperT is a result of Graves disease, there is still hope that something else is the cause.

I have only been dealing with thyroid problems for three months and it seems like forever already. Even though I am feeling better and hope to be off my medication soon, I will always be aware that the possibility exists that I may become hyper again or go the other way. The day my doctor said I was hyper was the same day she said, "oh what a shame it isn't the other way, then we could do the RAI treatment and be done with the ATD's. And this was my first day, dealing with the initial shock of having been diagnosed with such a disorder! But at the same time, I am thankful that she didn't let me go on taking the high dose of PTU when it was making me hypo these last two blood tests. No wonder I was feeling so tired!

Another question: I know we are supposed to wear ourselves off ATD's slowly. So currently I am taking half a pill a day of PTU. 50mg. How do I go about doing this now? Take one every other day? I don't want to just quit cold turkey. I go back to the doctor Oct. 24th and my next blood tests will be back then, so she said that probably at that visit she would be able to tell me to go off PTU altogether. Is this the proper way to go about this? I also asked her if I should even keep my endo appointment that I have next month. It's a waste of time to drive two hours for a 15 min appointment but I'll go if it's necessary. I think just for his benefit I should go so that he can see how well I am feeling now and how he was wrong about Graves. But the thing is....I don't know if I even HAVE graves yet! I am sitting on pins and needles waiting for those stupid test results!

I know that there are people here on the list who have Graves but are in remission. My question is: How long were you on your antithyroid meds before going into a remission? Like I said, I was only diagnosed in early July as being hyperT and my son was born three months prior to that time. For anyone new here my son is six months old now and I continue to breastfeed him a couple times a day while taking PTU. He is taking the bottle well and I have adjusted to the idea that I will not be able to breastfeed him full time and for the length of time that I did my first son. That was the hardest part for me when I discovered my thyroid problems. I breastfed my first son for over two years!

I have also had my baby's blood tested twice since taking PTU and both times his tests have come back okay so it didn't seem to effect him at all which is good news!

Okay, I'll close now. I haven't posted in a couple of weeks. I have been trying to find time to catch up on all the e-mails I've gotten!

Jen in Canada

[Guest guest]

Ran across your post while cleaning out my inbox, kiki. What did

you decide to do? 's supplement list? Surgery? RAI?

Donna

http://trak.to/life

www.reliv.com

Take control of your health!

kikiconquers@... wrote:

Help!This is my last attempt to find healing

for Graves before I am

forced to consider a dramatic option. Thyroid disorders run in

the

female side of my mother's family but I seem to have the most severe

case. I have had Graves for 4 years now, went on Tap for a year

and

it seemed to be in remission although I still had large goiter.

After

the birth of my son two years ago my levels became slightly elevated

for a year and then they went soaring up again. My endo tried to

heavily push RAI but I demanded a second trial of Tap for another

year which is almost up. Now he he wants me to make a decision

to

either have RAI or get it cut out. I have tried many alternative

treatments- homeopathy, changing my diet, cranial sacral,

acupuncture, herbal supplements, and nothing has worked for longer

than a few months. I visited ithyroid and am intrigued at the

suggestion of vitamin and mineral supplement and am curious if

this

has really worked for people with severe Graves. I am willing to

try

anything to avoid RAI but I am feeling like time is running out

for

me...

[Guest guest]

Hi Kiki,

I've been working with an increadible person for some

healing......I'll be happy to give you his phone #....

Working with him has changed my life, he'll be happy

to speak with you, and this isn't a money thing.

I still have some difficulties with thyroid, but they

are minor.....mostly now I have to be in charge of my

stress and nutrition.

Please feel free to email me at evesmart2000@...

and I'll send his number.

e

--- Donna <roberts5@...> wrote:

> Ran across your post while cleaning out my inbox,

> kiki. What did you

> decide to do? 's supplement list? Surgery?

> RAI?

>

> Donna

> http://trak.to/life

> www.reliv.com

> Take control of your health!

>

> kikiconquers@... wrote:

>

> > Help!This is my last attempt to find healing for

> Graves before I am

> > forced to consider a dramatic option. Thyroid

> disorders run in the

> > female side of my mother's family but I seem to

> have the most severe

> > case. I have had Graves for 4 years now, went on

> Tap for a year and

> > it seemed to be in remission although I still had

> large goiter. After

> > the birth of my son two years ago my levels became

> slightly elevated

> > for a year and then they went soaring up again. My

> endo tried to

> > heavily push RAI but I demanded a second trial of

> Tap for another

> > year which is almost up. Now he he wants me to

> make a decision to

> > either have RAI or get it cut out. I have tried

> many alternative

> > treatments- homeopathy, changing my diet, cranial

> sacral,

> > acupuncture, herbal supplements, and nothing has

> worked for longer

> > than a few months. I visited ithyroid and am

> intrigued at the

> > suggestion of vitamin and mineral supplement and

> am curious if this

> > has really worked for people with severe Graves. I

> am willing to try

> > anything to avoid RAI but I am feeling like time

> is running out for

> > me...

> >

> >

> >

[Guest guest]

Ah good, Eve! This has been such a negative-feeling week; good news

is very appreciated! So glad you're doing better.

Donna

http://trak.to/life

www.reliv.com

Take control of your health!

eve johnston wrote:

Hi Kiki,

I've been working with an increadible person for some

healing......I'll be happy to give you his phone #....

Working with him has changed my life, he'll be happy

to speak with you, and this isn't a money thing.

I still have some difficulties with thyroid, but they

are minor.....mostly now I have to be in charge of my

stress and nutrition.

Please feel free to email me at evesmart2000@...

and I'll send his number.

e

--- Donna <roberts5@...> wrote:

> Ran across your post while cleaning out my inbox,

> kiki. What did you

> decide to do? 's supplement list? Surgery?

> RAI?

>

> Donna

> http://trak.to/life

> www.reliv.com

> Take control of your health!

>

> kikiconquers@... wrote:

>

> > Help!This is my last attempt to find healing for

> Graves before I am

> > forced to consider a dramatic option. Thyroid

> disorders run in the

> > female side of my mother's family but I seem to

> have the most severe

> > case. I have had Graves for 4 years now, went on

> Tap for a year and

> > it seemed to be in remission although I still had

> large goiter. After

> > the birth of my son two years ago my levels became

> slightly elevated

> > for a year and then they went soaring up again. My

> endo tried to

> > heavily push RAI but I demanded a second trial of

> Tap for another

> > year which is almost up. Now he he wants me to

> make a decision to

> > either have RAI or get it cut out. I have tried

> many alternative

> > treatments- homeopathy, changing my diet, cranial

> sacral,

> > acupuncture, herbal supplements, and nothing has

> worked for longer

> > than a few months. I visited ithyroid and am

> intrigued at the

> > suggestion of vitamin and mineral supplement and

> am curious if this

> > has really worked for people with severe Graves. I

> am willing to try

> > anything to avoid RAI but I am feeling like time

> is running out for

> > me...

> >

> >

> >

[Guest guest]

Thanks Donna,

Yes, nice to get some good news.......I feel

great.....only symptom that bugs me sometimes is the

slightly tachy heartrate....not even over a

hundred---wooohoooo!!!!!

by the way, cal/magnisum has considerably assisted

with palpitations, since I started cal/mag, I've had 1

or 2 little bleeps, before then it was the norm, when

I was having a wave of hyper.

love to all.

e

--- Donna <roberts5@...> wrote:

> Ah good, Eve! This has been such a negative-feeling

> week; good news is

> very appreciated! So glad you're doing better.

>

> Donna

> http://trak.to/life

> www.reliv.com

> Take control of your health!

>

> eve johnston wrote:

>

> > Hi Kiki,

> >

> > I've been working with an increadible person for

> some

> > healing......I'll be happy to give you his phone

> #....

> >

> > Working with him has changed my life, he'll be

> happy

> > to speak with you, and this isn't a money thing.

> >

> > I still have some difficulties with thyroid, but

> they

> > are minor.....mostly now I have to be in charge of

> my

> > stress and nutrition.

> >

> > Please feel free to email me at

> evesmart2000@...

> > and I'll send his number.

> >

> > e

> > --- Donna <roberts5@...> wrote:

> > > Ran across your post while cleaning out my

> inbox,

> > > kiki. What did you

> > > decide to do? 's supplement list? Surgery?

> > > RAI?

> > >

> > > Donna

> > > http://trak.to/life

> > > www.reliv.com

> > > Take control of your health!

> > >

> > > kikiconquers@... wrote:

> > >

> > > > Help!This is my last attempt to find healing

> for

> > > Graves before I am

> > > > forced to consider a dramatic option. Thyroid

> > > disorders run in the

> > > > female side of my mother's family but I seem

> to

> > > have the most severe

> > > > case. I have had Graves for 4 years now, went

> on

> > > Tap for a year and

> > > > it seemed to be in remission although I still

> had

> > > large goiter. After

> > > > the birth of my son two years ago my levels

> became

> > > slightly elevated

> > > > for a year and then they went soaring up

> again. My

> > > endo tried to

> > > > heavily push RAI but I demanded a second trial

> of

> > > Tap for another

> > > > year which is almost up. Now he he wants me to

> > > make a decision to

> > > > either have RAI or get it cut out. I have

> tried

> > > many alternative

> > > > treatments- homeopathy, changing my diet,

> cranial

> > > sacral,

> > > > acupuncture, herbal supplements, and nothing

> has

> > > worked for longer

> > > > than a few months. I visited ithyroid and am

> > > intrigued at the

> > > > suggestion of vitamin and mineral supplement

> and

> > > am curious if this

> > > > has really worked for people with severe

> Graves. I

> > > am willing to try

> > > > anything to avoid RAI but I am feeling like

> time

> > > is running out for

> > > > me...

> > > >

> > > >

> > > >

[Guest guest]

In a message dated 02/27/02 9:13:53 AM Central Standard Time,

dalerin@... writes:

>

,

My dr. told me to take l-gluatamine for candida. It is supposed to help

repair the damage done to the intestinal lining due to leaky gut syndrome,

for which she says I'm the poster child for lol. I take it in powder form (2

scoops a day).

annette

[Guest guest]

If I am correct, there is someone on this list who is quite knowledgeable

about medications and supplements. My question has to do with dessicated

thyroid as opposed to Armour Thyroid. What is the difference??? Jean

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Hi Deb. What is probably happening is that you are loosening some stuff and it

causes fermentation. Feels bad, but is a good sign. You might try taking

digestive enzymes in extra doses. It should help greatly. I find, also, that

digestive enzymes increase my energy greatly. When they are not digesting food,

they are involved in all the body processes and just really make you feel

better. It is the enzymes as much or more than the vitamins in raw food that

give you so much energy. It is the enzymes, as much or more than the vitamins,

in food that is destroyed when you cook food. Enzymes=life and health and

energy. As Martha would say. It's a good thing. Smile.

I use quadrazyme by RGarden. Others might have other suggestions.

Donna

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

HI

I have been eating better,, more bran and yogurt ... oranges and such. I am

now having a very hard time with GAS!! I cant make it move one way or

another... any suggestions would be gratefully appreciated!!! Thanks!

Deb

[Guest guest]

Hi Deb, I'm sure you will get lots of suggestions on this. I used to use Fennel

tea whenever I had gas and it really helped. Gas can be painful. Good

luck... of Dewberry Hill

HI

I have been eating better,, more bran and yogurt ... oranges and such. I am

now having a very hard time with GAS!! I cant make it move one way or

another... any suggestions would be gratefully appreciated!!! Thanks!

Deb

" People are like stain glass windows; they sparkle and shine when the sun is

out, but when the darkness sets in, their true beauty is revealed only if there

is alight within. " -Kubler Ross

" Then spake Jesus again unto them, saying, I am the light of the world: he that

followeth me shall not walk in darkness, but shall have the light of life. "

Holy Bible

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

[Guest guest]

I know very little about enzymes, but this post in another forum looks good:

http://www.mailorderfoods.com/messages/messages/1/93435.html

-- Helge

>I use quadrazyme by RGarden. Others might have other suggestions.

>Donna

[Guest guest]

I am WAY behind reading posts to this list, and just noticed this

message, maybe there has been a reply, but peppermint is great

for moving gas - a drop or 2 of the oil in warm water, peppermint

tea, etc.

L. Meydrech, CN

http://nutritionist.tripod.com

" A cheerful heart is good medicine " Prov. 17:22a

having a very hard time with GAS!! I cant make it move one way or

another... any suggestions would be gratefully appreciated!!! Thanks!

[Guest guest]

Carol,

I think it's partly hormone and an age thing. My son has just turned 16 yrs. old and he changes with the wind. As for us, we try to allow him to make decisions--whether right or wrong--and yes, we are there when he "falls". I feel it's all part of growing up (and a touch of stupidity-ha).

The only way at times we can manage the arthritis is to remember it's part of who these kids are--it's not who they are. Allowing them to venture out will help them with decision making.

Good luck.

[Guest guest]

Carol

hi

your in the same boat as me will be 15 on the 11th of April

the line for lic is LONG and a 3 hour line at that or more

if your daughter is determined to do what she wants let her do it

i have grown custom to letting melissa test her OWN limits like today she

was up and out riding her bike with a friend BUT only right around the house

she knows we have to stand in the line today also another limit she will set

for herself for her birthday present she likes me to get her a season pass

to six flags

which is a BIG place her restrictions are she HAS to use the wheelchair

because WE both know she cant do it alone

the best suggestion is to sit your daughter down and explain to her she will

have to except what her actions will bring to her

Its hard being a parent and even harder having to be a parent to a child who

has JRA

but we cant rob them of happiness nor can we take what they would normally be

doing this is so hard for me to still except for my daughter

JRA a life of pain for the rest of her life

the doctor made this statement to me and melissa

when your dealt a rotten deck of cards you have to make the best of it

so melissa does and i do my best

allow your daughter the freedom of being a teenager dont rob her of it

if limits are needed then set them but allow the child to see how much they

can take they will adjust to their limits

one thing PLEASE enjoy the things they do and can do do support her in

what she wants to do

and if she falls be there to catch her even if you can say i told you so

if she wants to do things all day and you know the next day will be so

fatigued for her she cant get out of bed then she needs to do that

if you know its a trip to the ER then go with that it will be a way to show

the child this is your limit remember when you did it before

a child has to be a child no matter what disadvantage they have

you have unconditional love for them no matter what they choose

((((((((((((((((Hope))))))))))))((((((((((Faith))))))))))))))((((((((((((Love)

)))))))))))))

(((((((((Support))))))))))))))))))))

Robbin

[Guest guest]

If I could offer me $1.98 worth of advise, although I do not have children, I do have the experience of growing up with jra, through my teenage years. And I know from experience, that trying or keeping them from something they want to do or try, is going to cause resentment. And yes, it is not who we are, jra, but rather a part of our total make up and personality.

My mother stop me from a experiencing a few opportunities as a teen, which would have been a life long experience.

One might not think that such little events is a childs' life could or would make a big difference in path for the future, what course in life they may choose.

So give them the opportunity to try, experience and fail, if that is to be, be there to pick them up when they fall, but never extinguish their desire to scale to new heights.

Rusty Limbs

On Mon, 8 Apr 2002 06:50:32 EDT KAmitchemalways@... writes:

Carol,I think it's partly hormone and an age thing. My son has just turned 16 yrs. old and he changes with the wind. As for us, we try to allow him to make decisions--whether right or wrong--and yes, we are there when he "falls". I feel it's all part of growing up (and a touch of stupidity-ha).The only way at times we can manage the arthritis is to remember it's part of who these kids are--it's not who they are. Allowing them to venture out will help them with decision making.Good luck.

[Guest guest]

Carol,

My daughter Ashton will be 16 this October,she has her permit now!(Joy!)

She too tests the limits....I try to sit & talk at times with her about the

benefits & the risks in what she wants to do. But I am really trying as hard

as it is to let go alittle......Our kids are growing up so fast & will soon

be out on their own. College is just around the corner,where she will have to

make decisions for herself. So,I try now to guide her,gently sometimes not so

gently make suggestions. But she is one day going to be in control of her

destiny. I want JRA to be something that she has but not something that she

is!!!! It will always in some way define her because of her experience with

this dreaded disease she will never be the same. But sometimes that can be a

good thing....she definitely is more compassionate because of JRA. While I

can't tell you what to do I definitely can relate to the struggle...it was

easier somehow when I could just say no ..without explinations.or make

traetment decisions because it's what I thought was best. But I feel at some

point we need to begin letting them become more independent in their

disease. and of course be there for them no matter what!!!! My best wishes

to you!!!! Kris

[Guest guest]

--- Robbin40@... wrote:

> Carol

> hi

> your in the same boat as me will be 15 on

> the 11th of April

> the line for lic is LONG and a 3 hour line at that

> or more

> if your daughter is determined to do what she wants

> let her do it

> i have grown custom to letting melissa test her OWN

> limits like today she

> was up and out riding her bike with a friend BUT

> only right around the house

> she knows we have to stand in the line today also

> another limit she will set

> for herself for her birthday present she likes me

> to get her a season pass

> to six flags

> which is a BIG place her restrictions are she HAS

> to use the wheelchair

> because WE both know she cant do it alone

> the best suggestion is to sit your daughter down

> and explain to her she will

> have to except what her actions will bring to her

> Its hard being a parent and even harder having to

> be a parent to a child who

> has JRA

> but we cant rob them of happiness nor can we take

> what they would normally be

> doing this is so hard for me to still except for my

> daughter

> JRA a life of pain for the rest of her life

> the doctor made this statement to me and melissa

> when your dealt a rotten deck of cards you have to

> make the best of it

> so melissa does and i do my best

> allow your daughter the freedom of being a teenager

> dont rob her of it

> if limits are needed then set them but allow the

> child to see how much they

> can take they will adjust to their limits

> one thing PLEASE enjoy the things they do and can

> do do support her in

> what she wants to do

> and if she falls be there to catch her even if you

> can say i told you so

> if she wants to do things all day and you know the

> next day will be so

> fatigued for her she cant get out of bed then she

> needs to do that

> if you know its a trip to the ER then go with that

> it will be a way to show

> the child this is your limit remember when you did

> it before

> a child has to be a child no matter what

> disadvantage they have

> you have unconditional love for them no matter what

> they choose

>

((((((((((((((((Hope))))))))))))((((((((((Faith))))))))))))))((((((((((((Love)

>

> )))))))))))))

> (((((((((Support))))))))))))))))))))

> Robbin

>

hi,my name is valerie and my son is 3 years

old and has jra. and i'm so scared, it is like

everytime i touch him him yelling ouch, and i

feel like i'm hurting him. and i know it is the

diease he has. i don't know what to do here. i'm

about to go crazy here. i have not worked in

about 3 months. no support from family just

friends.what else can i do here?

__________________________________________________

[Guest guest]

i went through that with their skin can be so sensitive to touch

i would just hold her where she didnt hurt or ask her to show me where i

could put my hands where she didnt hurt

you really need to go to the social security office and sign your child up

for SSI

this will help you and the child also go to the human resources office and

sign up for what they have at least for right now this will help til things

change

also call your local arthritis foundation and see what they can help you with

the goverment has programs to help its just getting to them

if your having housing problem go to HUD they can direct you to the place you

need to go also Habitat will help

call the social security and ask

if i can help more let me know

Robbin

[Guest guest]

I could not AGREE more! As a member of JRA my whole life my parents tried to

stop me from being me and living my life. They even stopped me from attending

college, telling me it would be too hard. Well guess what group, JRA is hard

enough in itself....Let your kids test their limits as teenagers. They will

learn their limits, they will learn compassion and they will learn self

disipline. Actually as an adult, I have become too impatient to experience

all I can now since I am my own boss. As a result I exhust myself to my very

core. I see my own teenagers (13 year old girl, nearly 15 year old boy)

there involment in life and I missed so much because of my parents. I

remember packing all I could in a day without them knowing how much it hurt

me. I had to become sneacky and with- drawn. I began to ignore my parents out

of resentment. They kept me from football games because of the stadium steps

at my high school, they kept me from trying to be as normal as I could with

my friends.

Please, they will learn, they will stumble, they will be stiff and sore. All

that is enough to combat besides missing out on these precious years. You

know your kids better than I do, and I understand your fears, as my parents

must have had them. Watch them, caution them, keep all communication open,

but take an extra second to re-think all your immediate No's. Learn to trust

not only your hearts but their's also. Carolyn JRA since approximately 8

years old, now 42 (ugh!