new at this

July 1, 2000

Hello

I am pretty new to this as well. My daughter is only 4 1/2, she was

diagnosed in 1997 with pauciarticular JRA also. At that time she was

suffering from one joint being swollen. It was hard to get that diagnoses,

we saw many doctors and did a lot of blood work and tests. Now is a

very active girl, she is on prednisone, methotrexate and naprosyn as well as

folic acid. What signs does your daughter exhibit, is you appt in a month

with a pediatric rhuematologist? When we were in mid-stage of 's

diagnoses her Ped. had her admitted into the Children's Hospital under the

Hemotology (sp?) ward to get a faster diagnoses. I'm sure we all can fully

understand how frustrated and anxious you are for a diagnoses, whether it be

JRA or something else. I read that you are researching to find out all you

can about meds, remedies ect. One thing that we also do with is take

her to a chiropractor. I know it sounds kind of " out there " but we have had

very good results. He is able to minimally adjust 's knees and all

joints that seem " out " and keep her immune system working at peak. We tried

a naturopath as well but that wasn't as effective. I'm not in any way

suggesting this for all, its simply one more way we help her.

Well sorry to be so long, good luck with the appt

G

>From: Younge <sjyounge@...>

>Reply- egroups

> egroups

>Subject: New at this

>Date: Thu, 29 Jun 2000 01:18:04 -0500

>

>Hi,

>

>I'm new to this list and am pretty unsure of how you guys work it. I am

>a member of a couple other loops and the rules are different with each

>one so please be patient until I learn how everyone uses this loop.

>

>The reason I joined is that my 3 yod has signs of JRA. We saw our local

>ped. last week and have an appointment with the Children's Hospital next

>month. I'm wanting to research all that I can about JRA-her's is

>appearing to be the pauciarticular (sp?). She only complains with her

>knees. I have checked out a few web sites but so many of them are so in

>depth that sometimes moms are much better at explaining everything in

>much quicker terms. I just want to know everything that I can about

>meds, exercises, diet, supplements, everything else before her

>appointment with the specialist so that I'll know what questions to ask.

>If any of you have any advice or would just like to share your

>experience, you can e-mail me personally if that info is " old news " for

>the loop.

>

>TIA for any info that you can give,

>

________________________________________________________________________

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November 14, 2002

In a message dated 11/14/2002 11:46:47 PM Eastern Standard Time,

ccarmel1245@... writes:

> Please if anyone has some words of

> encouragement or advice please help me.

>

I can't believe those idiot doctors all missed such an obvious diagnosis!

Where do you live that it takes so long to get help? If you start taking

beta blockers (which your family doctor can prescribe) that should take care

of the rapid heartbeat. As soon as I started taking beta blockers I felt

better right away, and after taking Tapezole for a few months, I weaned off

of it and was fine (I had hyperthyroidism, or Graves Disease, too).

So, where has your family doctor been in all this? Or maybe the system is

different where you are? You should be able to get the meds RIGHT AWAY to

put an end to your suffering. Your symptoms are familiar to ANYONE WHO HAS

HAD GRAVES DISEASE, and you can tell that to your husband.

Hope you can get the help you need soon. Keep us posted, OK?

Best,

AntJoan

February 16, 2003

Hello Kayla's Mom,

I wish you the very best. As for getting ahead of yourself, you're just

being aware of the possibilities that are out there. My daughter is 3 and

gets red eyes all the time. Under eyes will turn purple, she has a severe

light sensitivity, a lot of eye discomfort. It's not Uveitis though.

I wish you the very best. You have found a wonderful group of people.

Loving hugs and prayers,

Cas and Tas

February 16, 2003

Welcome to the list. My daughter has systemic jra, age 14, so I may not be

able to answer all of your questions. There are lots of people who will

chime in and help you though. I am glad you are getting to see a ped.

rheumy so quick. I would recommend that you keep a diary of your child's

symptoms and write any questions you have down to ask the doctor. I then

write the answers down as the doctor gives them to me. If your daughter

does have jra then you will want her to be seen by a ped . opthamologist

every 3-6 months.

The ped. rheumy may take more blood tests and will examine all of your

daughter's joints. Sometimes if the jra just strikes a joint or two, they

may recommend joint injections rather than long term medication. These

joint injections can be effective for a short while or for a very long time.

If you let us know which doctor you will be seeing, you may find someone on

the list that sees that same one. Good luck and ask any questions that you

may have. (n, age14, systemic)

New at this

> Hello all. I am kinda new at this so please bear with me.

> I am the mother of a beautiful, active 8 year old daughter. Over the

> past two years Kayla has been treated for at least 5 " sprains " of her

> right ankle. She is pulled out of gym for several weeks, feels

> better, then we go through it all over again. About a month ago we

> went through this again, and I started demanding some answers. The

> ortho. doc did a bone scan and some blood tests. Everything was

> normal EXCEPT she had a positive ANA test(1:160).Now she is going to

> see a ped. rheumatologist March7th. I have been doing a bit of

> research, and needless to say, I'm scared! I am worried about the eye

> condition. Am I getting ahead of myself?? She has had routine eye

> exams in the past because her eyes get very red. What should I expect

> to happen with the rheumatologist. We will be traveling about 60

> miles to see this doc. I don't want to miss anything.

> Thanks for listening!

>

> To leave this mailing list, send request to:

> -unsubscribe

>

February 16, 2003

The doctors name is Dr. Hannan at University Hospital in Syracuse NY.

Thanks for the info.

February 16, 2003

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October 26, 2007

while on dialysis, my Dr put me on sensipar for secondary hyperthyroidism.

after my

transplant, they took me off. it's been almost 2 years since my transplant and

i am once

again being tested for secondary hyperthyroidism --- my levels indicate a high

amount of

calcium, which has been the root of my problem. i am having a bone density test

next month

and they drew labs for a PTH. once all the test results come back they will

determine a

course of action. it's got me worried...is my new kidney not working at full

speed? Am I on

the verge of having a rejection episode? perhaps, i'm jumping the gun, but it's

hard not to

think otherwise, especially since the Drs have called my new kidney " sleeping

beauty "

September 16, 2009

Drink lots of water, just regular old filtered tap water. Distilled water will

not have the trace minerals needed to keep you healthy. Sports drinks, fruit

juices, vitamin water, etc don't count for your ounces of water...your body

should no be made to work for its water. Take your weight divided by 2 for the

number of ounces of water you should drink per day. A 200 pound person, me,

needs about 100 ounces of water a day. Drink water and watch a funny movie.

One of the most important things to do is keep yor life " Sunny Side Up " .

>

> Is it common to have days where you have absolutly no energy to do anything

and your entire body hurts like you were hit by a truck. I go back to the dr. on

the 5th but I don't know if I can take this that long. I have spent most of the

day in bed cause I just don't have any energy and I feel like crap. I don't know

what stage I'm in yet suppose to find out at next appointment. Any suggestions.

Please.

>

September 16, 2009

Hi Spots

We all experience just what you stated. I find alternating heat and ice packs

helps the aches. Try to divert your mind with positive memories, swear you will

do that again, focus on beautiful things you've seen in your life, It's tough.

You feel like a prisoner of your own body. I spent years mad at myself for not

being able to do the things I love, salt water fishing, diving,

climbing mountains, hiking through jungles. I set a goal. To visit every

central american country. I have one lefft to go. Panama. I got my passport

renewed today. Sleep as much as you like. In a few days you will feel better.

As far as energy........I've spent up to 3 days in bed, unable to even cook, not

even caring if I took a shower or combed my hair. On my good days, I put on my

makeup, fix my hair nicely and do something I thought of during the down days.

try to help someone sicker than myself, feed the birds(I have an egret who

knocks on my window,

so I spend time with him, volunteer at the no kills SPCA. Go see a friend

dying of cancer, Trust me, it helps me recognize there are people out there

with worse problems other than self.

Patti

spots141 <sherisheeder@...> wrote:

From: spots141 <sherisheeder@...>

Subject: new at this

Hepatitis C

Date: Wednesday, September 16, 2009, 4:44 PM

Is it common to have days where you have absolutly no energy to do anything and

your entire body hurts like you were hit by a truck. I go back to the dr. on the

5th but I don't know if I can take this that long. I have spent most of the day

in bed cause I just don't have any energy and I feel like crap. I don't know

what stage I'm in yet suppose to find out at next appointment. Any suggestions.

Please.

September 17, 2009

Hi Spots,

I'm so very sorry you had so many burdens to bear so close to each other. My

divorce was 4 years ago. He became an alcoholic and tore both rotator cuffs,

herniated 8 discs and broke 3 ribs. I had to declare bankrupsy, forclosed on my

home and a divorce all within 3 months. It seems when it rains it pours. My

son died two years before that and my dad the year after. Why, why, kept

vibrating through my head. I've always tried to be a good pay it forward

person. I moved to Fl away from the toxic feelings I felt in TX but you bring

your problems with you. No where to hide so you have to face the demons sooner

or later. Try and find a support group, one you can talk openly with. see a

counclor, talk with your pastor if you are close to the church, I saw two for

6 months before I moved. and still had the fear he instilled in me with men in

general. I would go on a date and be home within an hour. I looked for

negatives instead of positives. Now I have finally reversed it and such a

weight has been lifted off me. God says there's a reason for everything thawt

happens to us. I think part of my job is to help others with Hep. Don;t group

your problems, deal with them one by one until you have accepted that one, then

attack the next.

As far as foods and water, drink all the water you can, not bottled water. Take

your own water in a stainless steel jug everywhere with you. No aluminum, no

iron pots and pans. Stainless only. Get a reverse osmosis system Home Depot.

Our bodies are made up of mostly water and it helps flush out all the impurities

in our systems. I hate veggies, love fruits but eat veggies anyway. Take mega

vitimins with D, B and C. Take extra C, I pureee asparagus, powerful

antioxident, ,mix a little cheese in it and nuke it 3 times a day. Milk thistle

is essential. Read up on foods high in fiber and antioidents. Sugar is poisen

and helps spread cancer. NO SODA POPS. feuit juces are good if not full of

sugar. Get on a first name basis with at least two different herb stores, tell

them everything. They are wonderfully knowledgable. Even though I know it's

poisen to the liver once a month I allow myself eggs benedict and champagne

mamosas. Boy do my marguritas miss me. LOL

Anything else I can help with jusr hollar.

Patti

n Thu, 9/17/09, Sheri Sheeder <sherisheeder@...> wrote:

From: Sheri Sheeder <sherisheeder@...>

Subject: Re: new at this

Hepatitis C

Date: Thursday, September 17, 2009, 7:01 AM

Hi Patti,

Thank you for the advice, it's really hard to stay positive. I've always been

the one to be out doing things or helping others and now things have changed and

I can't stand it. I have started drinking alot of water instead of pop and that

seems to help some. I guess I'm feeling sorry for myself and I have to stop it

cause it's not helping anything. When I got clean and sober, I thought alright,

I'm young, I have wonderful daughters and grandchildren and I have so many years

ahead of me to enjoy them. Then everything started going down hill. I got

divorced, my oldest daughter commited suiside the day before her birthday, one

of my grandsons was lifelighted for a heart condition at 5mo old, I had a

stroke, and so on, believe me there has been many more and now there is this, I

just don't get it. Is there anything special that I should be eating or should

it just be all healthy stuff. I have a rabbit and a squrrial that I've been

feeding my cookies to, they

seem to enjoy them. I am truely greatful for any and all advice you can give me,

I'm just so confused about it all.

Thank You,

Spots

____________ _________ _________ __

From: patti <fishinggal2008>

Hepatitis Csupportgr oupgroups (DOT) com

Sent: Wednesday, September 16, 2009 5:45:19 PM