Help!

[Guest guest]

I applaud your understanding as a parent. I have always said, " I have JRA, it

does not have me! " Carolyn Mullin 42 years old - with JRA.

[Guest guest]

What a great message Carolyn! As the mom of a teenager dealing with this, I

totally agree with your last paragraph. We definitely encourage our son to

test his limits. He is ole enough to know when its too much. Watching him

struggle is tough, but the rewards are many. Thank you for your message!

Michele

Re: HELP!

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!

[Guest guest]

Thank you!! It's great to hear from someone who has " been there " ! Kris

(Ashton poly jra 15)

[Guest guest]

I sent this to my teenage daughter's email...what a great reminder THANKS

Kris

[Guest guest]

Hi ,

You said it : ) Like the old saying goes .... sometimes experience is the best teacher.

Aloha,

Georgina

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]

Hi Robbin,

Thanks for all of the wonderful advice in that reply. Very well said. That one statement, about the deck of cards, reminded me of another that I like: When life hands you lemons .... make lemonade : ) Or lemon meringue pie : )

Aloha,

Georgina

...... 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 itif 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..... ((((((((((((((((Hope))))))))))))((((((((((Faith))))))))))))))

((((((((((((Love)))))))))))))) (((((((((Support))))))))))))))))))))Robbin

[Guest guest]

Hi Kris,

Thanks, for such a thoughtful message. As hard as it sometimes is, this is something we do need to strive towards. It does seem easier, in a lot of ways, when our children are younger. Doesn't it? We try our best to raise kids with analytical minds and then suddenly ... we find they're starting to sort through and question just about everything. The formerly "all-knowing parents" thoughts and actions, as well : ) Each stage of growth, I guess, has it's own complications and rewards. It sounds like you guys are definitely on the right track.

Aloha,

Georgina

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]

Thanks Carolyn, for this reminder. Used to be that Josh was in too much pain and didn't have the strength or stamina to participate very actively in regular sorts of childhood activities. Now that he is doing better, sometimes it seems like he wants to make up for all the lost time. Sometimes he overdoes it and then pays the consequences for it later on or into the next morning but you're right. It's all a part of the necessary learning process.

Aloha,

Georgina

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!

[Guest guest]

your stomach filling up, is acsites or fluid. It puts pressure on your lungs

and makes it difficult to breath. Try lasix first and if that does not help,

they can tap your stomach and drain the fluid. It gets better and better,

damn disease!!!!!!!!! good luck,

[Guest guest]

your stomach filling up, is acsites or fluid. It puts pressure on your lungs

and makes it difficult to breath. Try lasix first and if that does not help,

they can tap your stomach and drain the fluid. It gets better and better,

damn disease!!!!!!!!! good luck,

[Guest guest]

> I was diagnosed with Hep C April 3rd. I go to the VA. They made my next

appointment June 27th, which is way to far off I think.

> My stomach swells up like I'm 9 months pregnant and it gets hard to breathe

and walk. Is this a symptom? What can be done for it?

> Thanx, Mic

Well I called my doc and she said to go buy some gas pills. Geepers!

[Guest guest]

> I was diagnosed with Hep C April 3rd. I go to the VA. They made my next

appointment June 27th, which is way to far off I think.

> My stomach swells up like I'm 9 months pregnant and it gets hard to breathe

and walk. Is this a symptom? What can be done for it?

> Thanx, Mic

Well I called my doc and she said to go buy some gas pills. Geepers!

[Guest guest]

Soili:

My son was diagnosed a little over 3 weeks ago. I know for myself, since our ped rheum has given us so little info, that I have been dwelling too much on the negative. I as a parent would have appreciated a pep talk in the very beginning...about the new drugs available, the fact that we can gain control of the disease, and also the need to project a very positive attitude to our kids....so they can be strong and positive. Attitude is everything! You have a wonderful opportunity to spark that hope for them....

Again, so glad you are here!

[Guest guest]

Soili,

First, I'd like to say welcome to the group (I haven't been on the computer much lately). My name is and my daughter is named , 8 yrs. old (dx at age 3 1/2 with systemic).

WOW! You should take this as a "honor" to be requested to do such a wonderful thing--helping parents and children. Back when was diagnosed I didn't know where to turn. I slipped into deep depression for almost a year until I found this group. They are wonderful people with many insights!!!

You asked what should you say? For me, if only I had had someone to say "I understand", it would have been wonderful. As it was, I knew of no one having these disease, in fact, there wasn't even a doctor in our town that treated children with JRA. I think to be empathetic (my opinion) would be a good approach. If I'm not mistaking, you are a parent of JRA. Right? You of all people know the feelings of frustration, depression, anger and all of the emotions that go along with finding out your child has just been handed down a dibilitating disease.

Also, encourage them to join a group like the one that we have here. If it wasn't for all of these parents, I'm not sure where I would be right now. They have been a friend and someone that can say "I understand" --that in itself has helped me more than anything.

Good luck and again, welcome!

[Guest guest]

Soili,

Just be up front and speak honestly from the heart - and it will all come. As

for what to say - I don't know how to help with that - I never seem to be at a

loss for words! Maybe if you break down the early stages of your child's

illness, such as when the first symptoms appeared, what you thought it was, what

the docs thought at first and the fear and frustration with not knowing what is

going on - you can take it from there and provide ideas for coping with the

emotional and physical realities that JRA throws at all of us. Sorry I can't be

more help - good luck.

Val

Rob's Mom (4,systemic)

In a message dated Fri, 31 May 2002 4:09:32 PM Eastern Daylight Time,

soilimar@... writes:

>

>

> Hi again everyone,

> as we have just been talking about feelings & guilt of a parent, I'd

> like to ask your advice. I told you probably in my first message that

> I find it difficult to talk with other parents as a mom beacause they

> are also my patients/clients. Now our departement head nurse, who

> organizes rehab courses for kids and families with jra for the

> summer, has asked me to talk to the parents as a mother of a jra

> child and the feelings involved when the child gets sick. I've been

> involved in those courses before many times as an OT, but this is

> new..these would be families with a recently diagnosed jra.

> Do I have the courage? I just wish finnish people would be less

> reserved and talk more easily about their feelings...like you people

> do!

> Tell me what you think, and tips what to say!!

> Soili

>

>

>

>

>

>

[Guest guest]

I use zapper together with the herbs. And I continue to use zapper after I am done with herbs.

Jasmina

[Guest guest]

www.drhuldaclark.org is very good also.

Jasmina

[Guest guest]

Hi, Cher,

Welcome. Check out www..net You'll find answers to your questions and lots of other info too. You can and should use the zapper with the cleanses but you can do the cleanses alone, too. The zapper I use is from Dr. . You can buy hers or make your own. She tells you how.

Best regards,

-----Original Message-----From: cherspunky1 [mailto:cherspunky1@...] Sent: Thursday, September 12, 2002 8:04 AMDr Subject: help!Ok I am new in here. Can anyone tell me if I should use a zapper when I do the parasite cleanse or should I just use the three ingredients first then move onto the zapper after that.What zapper should I get ,does anyone know?sincerely,Cher

[Guest guest]

, wish I had an answer. This is a great question. The only time I had blood was when I had a bladder infection, but it makes sense that if you can have blood from your stomach that exits in your stools, that you could also have blood in your urine from other places. Great question!

Debby

[ ] HELP!

Hello Everyone!I have a question that I hope someone can answer for me! I had bladder cancer in 1998, and have had the surgery and have been cancer free since then. Recently I had a bladder biopsy done, and that came out clean. My question is this: can any bad effects from the liver come through in your urine? I have had alot of blood in my urine recently, and the urologist can't seem to put a finger on it (as to why this is happening). I don't know if I need to contact my doctor at Hopkins or not!Any help with this would be greatly appreciated!AIH in land

[Guest guest]

Dawn,

Try to relax first. You are ahead in the sense you have a doc that KNOWS

what is wrong and is treating her. How old is your child? Where do you live

and what kind of treatment is being given?

Most lyme patients have co infections which may slow down the treatment as

most do not discover this untill treatment fails. At some time tests are

done to rule out other infections and once they know what other tick born

diseases are present then treatment is changed and most do well. Most of us

here have chronic lyme because it is not caught early and manifest itself

into the tissues and organs. Try to not show fear with your child as we do

not want her to be afraid and stress, stress will take its toll and be worse

in the long run. People can live with lyme disease without dying. Yes

sometimes it is frustrating and we think we'de be better off but there is a

rainbow. Don't give up! The patients that do not do as well are usually

already immune comprimized by something else going on in their body and

because the docs treating them think it is something else instead of lyme.

You really are ahead of this stuff by having a doc that believes in lyme

disease and is treating your daughter. Breathe in and blow out and try to

not let it get to you, this is a wonderful group and you are in good hands.

Write back if you want and were all here to listen and help when we can.

Jeri in IN USA We can do it together!

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[Guest guest]

Jen,

Get it biopsied immediately. If it is fungal, bacterial, viral or cancerous they will be able to tell. Also get a copy of the pathology report.

L.

hi everyone!

I had a specific ? about a fungal infection on the face (chin area)

very red and severe and keeps coming back. I've been to doctor after doctor

with different diagnosis such as impetigo or perioral dermatitis etc..

I was given an antifungal drug called diflucan but even that is not working

anymore

There are a million different fungus types out there... how would you know

what to plate zap? Any other suggestions to help me? I am already doing

mass dose of pau d'arco

I looked in cure for all diseases and saw nothing in regard to this type of

thing

Any response would be helpful to me right now. I am hurting.

[Guest guest]

If you red that article form Hulda's book, you will see that parasite cleaning, and lever flush may help you. You just have to start doing that.

Jasmina

[Guest guest]

Is there anyone from this group in Portland Oregon that I could talk to that is following Dr 's methods?

Re: HELP!

Jen,Get it biopsied immediately. If it is fungal, bacterial, viral or cancerous they will be able to tell. Also get a copy of the pathology report.L.

hi everyone!I had a specific ? about a fungal infection on the face (chin area)very red and severe and keeps coming back. I've been to doctor after doctorwith different diagnosis such as impetigo or perioral dermatitis etc..I was given an antifungal drug called diflucan but even that is not workinganymore :(There are a million different fungus types out there... how would you knowwhat to plate zap? Any other suggestions to help me? I am already doingmass dose of pau d'arcoI looked in cure for all diseases and saw nothing in regard to this type ofthingAny response would be helpful to me right now. I am hurting.

[Guest guest]

I wish i could be more encouraging, but I am still very new to this, only being

diagnosed hyper with a tsh of .002 and T3 and T4 way out of wack in June after

a miscarriage - I am still fighting it all, the meds aren't right, my weight is

out of control, infertility rules my life, my metabolism is in reverse (seems

like it) but I do hold hope that my condition will improve, but I have to take

better care of myself...I think that's what it comes down to. So if you are

willing to really become one with yourself, learn what your body needs and when

(easier said than done, still talking myself into it) then you can be " normal " -

I have no doubt I will soon again be " normal " but I have to stop blaming and

start controlling, with diet, with exercise, with relaxation techniques, I have

to start loving myself and therefore taking care of myself and I will be healthy

again....so will you....

help!

hi i'm glad there are people out there going thru the same thing. i

have been hyper for 2 years. I was diagnosed in icu 6 days after my

son was born. i had toxiema which caused congestive heart failure

which they say was all caused from a misdiagnosed thyroid condition.

After test after test, 3 meds( paxil tapozol,proponal, which i am

currently still on)and radio active iodine thearapy i am still hyper.

i have improved a little but still hyper. i get so frustrated because

iam only 25 and just got happily married and i am ready to have more

children. My 2 main problems is that i have had and still do have

alot of anxiety and stress, i have gained about 20 pounds and seemed

to devolp sinus problems.which i sometimes wonder if the sinus

problems are somewhat connected. i get worried sometimes that i will

never be normal again help i need a a comforting message to reassure

me that it is only a matter 0f time. don't worry i am not depressed

ialways greet every time with the best and i am a postive person. it

gets hard at times let me know what has work for you or what more i

need to do.

[Guest guest]

Ok, so, do the meds for hyperthyroidism cause you to gain weight? My

lord, I can't gain more weight. I've already been diagnosed, which

only means my dr. said it and not like I didn't know already, as

morbidly obese. If I gain any more I'm gonna scream. I'm to the

point where I'm thinking of getting that gastric bypass surgery

done. Anyone know if I will gain weight if the meds help my thyroid

even out more and I eat better and exercise? I'm so tired of being

overweight. Also, someday I'd like to have 1 more child and I want

to be able to bresatfeed. Ok Jen, breath. Anyway, if anyone knows

the answer to these questions, let me know or send me a link to go

to or suggest a book to read or something. Thanks.

Jen