newbie

February 21, 2005

Hi ,

A belated welcome to the group. I hope some of the others managed to give

you some good answers to your questions. I am always too far behind in reading

the posts to be any good nowadays. lol

as far as exercise is concerned, I used to do " Deep water Jogging " in the

swimming pool which I personally thought was excellent for building up stamina

without any pounding or extra stress on the joints. You have got to work quite

hard at staying afloat though. lol

Take care,

July 14, 2005

> Hello,

> My name is Marcy,I am the mother of a 16 year old girl with

Aspergers.She is > in mostly mainstream classes in high school and

seems to enjoy school (most days, anyway) She is on Strattera for ADD

and Respridal (sp) These > meds seem to work well for her. O

Hi Marcy. Just responded to another post of yours and asked how old

your daughter is We're trying to decide whether our daughter can

handle high school. Mid-way through 8th grade she wanted to be

homeschooled so we did a split -- a couple of classes at school and

other through indepedent study.

We're seeing a therapist tomorrow because of some intense meltdowns

lately. Most due to the loss of her grandmother we think. It's been

suggested that respiradol might be offered.

How has it helped your daughter?

Thanks,

Teakat

July 19, 2005

marcy <marcykeeling@...> wrote:

Hello,

My name is Marcy,I am the mother of a 16 year old girl with Aspergers.She is

in mostly mainstream classes in high school and seems to enjoy school (

most days, anyway) She is on Strattera for ADD and Respridal (sp) These

meds seem to work well for her. Others made her lose so much weight or

did'nt help her depression much.

Right now she is working on a comic strip with her 12 year old sister and I

think I need to step in before things get ugly. LOL

Thank you,

Marcy

Welcome Marcy! I'm glad you found us! Hope the comic strip went ok. lol.

Roxanna ô¿ô

Don't take life too seriously; No one gets out alive.

__________________________________________________

July 25, 2005

In a message dated 7/24/05 12:46:33 PM GMT Daylight Time,

happinessis_me@... writes:

I was diagnosed a year ago with FM, this is on top of the 10 years

I've spent with Psoriatic Arthritis. I'm 32. Seems like I've spent

alot of time in pain...I'm looking for new ways to get that under

control and was wondering if anyone had any suggestions. My doc hates

to give me pain killers, and advil or tylenol does nothing.

Britt

Hi Britt,

Welcome to the group. Glad you found us but sorry you have this disease and

really sorry you have a doctor that is not willing to help you. We have

mentioned this before but this is a case where it would be good if you could

press

a button that would transfer your pain and discomfort over to your doctor

for a period of time. (5 minutes should do it! lol) I bet you would get the

correct treatment then.

I think Kathy is right. You should try and get a new doctor if you can.

Good luck. Keep us up to date with how you are doing if you are able to.

July 27, 2005

Just want to thank everyone for the nice messages and advise. I am looking into

new medical care. Also I don't know how it applys to PA, but a friend of mine

living with fibro says there is only one disease and it all comes down to the

acidity of our bodies and if we can eat more alkaline foods we could turn

ourselves around. She is going to get me a list of these foods and I'll pass it

on to you all. It must work a bit, she has had it for 15 years and gets up at 4

a.m. to feed her animals and start her day and is in good spirits. I'm ready to

try anything, she says to start simple with fresh lemons in water....she drinks

it all day.

Again thanks to all, and know that everyday when I open my e-mail and see all

the new names in the group, I feel for you all. Big gentle hugs to you all.

Britt

August 23, 2005

Hi my name is Kristi and I live in Coeur d' Alene, Idaho...I was wondering if

anybody is from around here and have any referals of good Rhuemy's. Thank you

Britt <happinessis_me@...> wrote:I was diagnosed a year ago with FM, this

is on top of the 10 years

I've spent with Psoriatic Arthritis. I'm 32. Seems like I've spent

alot of time in pain...I'm looking for new ways to get that under

control and was wondering if anyone had any suggestions. My doc hates

to give me pain killers, and advil or tylenol does nothing.

Britt

[Editor's Note: Britt, welcome to the list. If you have a doctor who

essentially refuses to treat you, there is a lot you can do - start by getting a

new doctor. There is no reason for you to suffer like this. Several meds also

fight the progression of the disease while your doctor lets it progress. Find a

good rheumatologist who will treat YOU - and not sit there parallized with

inertia. Kathy F.]

August 31, 2005

Dear ann

Yhere are a lot of people here who know more than I do, but since we

just went through this this summer, maybe I can give you some

suggestions for supplements. So far we have just tried Kirkmans --

the good thing is that they try to make their supplements in various

forms/flavors to accomodate sensory needs. We use powdered

everything and put it in our son's drink. Right now we use

their " Spectrum Complete " multivitamin -- it doesn't have as high a

B6 content as SNT, and it seems to be working well. Also using

powdered Calcium (with vitamin D), extra vitamin C, Magnesium

glycinate, and the enzymes and probiotics. Once a day we give our

son a syringe of CLO and vitamin E (natural mixed tocopherols -- not

from Kirkmans, as I've heard that's better if your child isn't too

soy intolerant). We have seen a noticable improvement in language.

My guess is that it's because of the CLO, though I don't know for

sure.

Kirkmans can provide trial sizes of a lot of their products if you're

not sure it will work. So far, so good for us.

hope this helps

Rene

September 2, 2005

> different but wondered if there are any hard and fast rules to starting

> supplements.

Best to start one at a time, at low dose, and watch for reactions.

>>My son barely drinks his rice milk so I'm assuming he'll need

> Calcium.

My son was calcium toxic. Just because a child is cf, does not

necessarily mean he needs added calcium.

>>He's VERY hyper (always has been - but lately attribute some of

> this to yeast).

Commonly caused by phenol intolerance and/or yeast overgrowth

http://www.danasview.net/phenol.htm

http://www.danasview.net/yeast.htm

>>He has a lot of eye stims (wondered about CLO).

What helped my son with visual stims is written here

http://www.danasview.net/issues.htm

> son is non-verbal and uses sign but would welcome any suggestions on

> specific supplements that may be helpful in boosting his ability to

produce

> sounds. (miracle anyone??)

I wrote on the page above, what my son needed for language. You can

also read about supplements here

http://www.danasview.net/supps.htm

Dana

September 9, 2005

Hi ...so glad you are here.

>>>> I have 3 children, 26, 24, 16.

The oldest you are describing...what type of school is he in? And how

does he get alcohol? Does he have a job and his own money?

.

September 13, 2005

Mel,

Welcome to RA Support. Getting right down to the facts, with RA there

are periods of time where you feel better and then yes there are

flares when the pain is worse. My father was just recently diagnosed

with RA and I have been reading up on it quite a bit. RA is not

always easily diagnosed as there is no one specific test for it.

Though RA alone does not run in families the gene that makes you pre-

disposed to getting it can. Sometimes as a result of an injury or

trauma RA can become active. There are many sites to visit to learn

about RA. One that I found especially helpful was to visit the

National Arthritis Foundation website. I have been having problems

with my elbows, wrists, hands, knees and ankles but was just recently

told that though they suspected RA they now don't believe that it is.

You are not too young to have this condition the average onset in in

your 20's but even children can develop arthritis. Though there is no

cure to this disease, the earlier they catch it and treat it the

better.

Sincerely,

Barb 3173

-- In , " " <pmwheeler@o...> wrote:

> hi guys

> i've been provisionally diagnosed with ra (have to have more tests

> again in 6-8 weeks) and i am really scared.

> i knew that i wasn't right as my fingers have been really aching

(as

> have my legs and hips) and they're swollen

> my doc wanted to put me on antiinflammatories and steroids but was

> ok when i said i didn't really want to start taking them as yet

> i am in pain at night but i thought it was due to an old back

injury

> with referred pain, now i think it is due to the arthritis. my

hips

> hurt to lie on and my feet can't lie on each other

>

> just a couple of q's

> does this disease flare up? ie, will it be this bad (i know that

> it's not that bad comparitively) or will it receede

>

> are there any websites that are good to visit?

>

> thanks guys

> i am just shellshocked at the moment

> mel

> ps i am 34 with a 4.5 year old son and a wonderful hubby who

> unfortunantly lives away from us during the week

September 13, 2005

HI Mel and welcome I'm a newbie too they are thinking that I have

lupus(not been to a rheumatoligist yet)so hang in there.This is a

good site for suggestions and to whine on(I have done most of the

whinning latley)anyway hope your'e next tests are neg.-Tammy-

> hi guys

> i've been provisionally diagnosed with ra (have to have more tests

> again in 6-8 weeks) and i am really scared.

> i knew that i wasn't right as my fingers have been really aching

(as

> have my legs and hips) and they're swollen

> my doc wanted to put me on antiinflammatories and steroids but was

> ok when i said i didn't really want to start taking them as yet

> i am in pain at night but i thought it was due to an old back

injury

> with referred pain, now i think it is due to the arthritis. my

hips

> hurt to lie on and my feet can't lie on each other

>

> just a couple of q's

> does this disease flare up? ie, will it be this bad (i know that

> it's not that bad comparitively) or will it receede

>

> are there any websites that are good to visit?

>

> thanks guys

> i am just shellshocked at the moment

> mel

> ps i am 34 with a 4.5 year old son and a wonderful hubby who

> unfortunantly lives away from us during the week

October 20, 2005

Hi Kristy,

I know you are not exactly new to the group any more but I am just getting

around to welcoming you. lol I am a couple of months behind in answering mail

just now. Trying to get back up to speed but just not getting there at the

moment. I hope someone was able to help you regarding a Rheumy in or near Idaho.

I know a good one but unfortunately he is in my home town of Greenock in

Scotland so I guess that's of no use to you. lol

My name is by the way, (I don't mean that my surname is " By the way "

lol)

I'm 48 years old, had P since 23yrs old and PA 7 years later.

I hope you managed to get someone who can help you. Let us know how you got

on.

Take care,

December 11, 2005

Hi newbie-lou, I would expect your experience, here, will be like

mine. I have found this to be a kind and friendly place to connect

with others. Many of the people are very knowledgeable and helpful.

Don't hesitate to ask questions. The moderator(s?) of this site are

angels, who deserve our highest praise. Past newsletter issues are

informative as are site searches for particular bits of info/help.

I send warmest regards and pain-free thoughts to you from the Canadian

Rockies... brent

December 12, 2005

In a message dated 12/11/05 9:07:04 PM GMT Standard Time,

lou241978@... writes:

hiya i have recntly been diagnosed and would like to hear from others

in the same boat as me.

Hi Lou,

Grab an oar and join us.lol Yes, most of us here are in the same boat as you

with this wonderful disease.

There are lots of caring and knowledgeable people here so any questions or

whatever? Fire away. There is usually someone who can identify with whatever

it is.

Welcome to the group.

Oh, Just read your follow up mail.

I am sorry that you are struggling so much just now. I hope your Rheumy can

help you when you see him/her in January. Having the asthma on top of the PA

must be a nightmare.

Lou, just know that you will certainly not be thought of as a whinger here.

If that was the case we would all be whingers at some time. lol All you are

doing is telling us how you feel and after all, that is one of the reasons you

have joined the group isn't it? To " talk " to people who understand what you

are going through? So don't worry about that. Just " Whinge " away, as long as

you let us whinge back at you. lol

Take care,

December 17, 2005

hi laura- welcome and merry christmas. my name is charlotte henry and i live

in west des moines iowa, hope you like this group and can share some knowledge

with all of us as well. one of the leaders in my family fun night support

group had a speaker with a grandson with the williams disorder, i remember her

saying he was very cute and he was small in stature, my son josh has sid and

apraxia and low intelligence but we have made amazing progress in the last

year. charlotte

January 18, 2006

Welcome Sharon,

Good to have you! We also have another board called, " Hep C Liver Pool " if

you need another place to hang out.

Question:

You say that you only got through week 5, and the doc took you off tx due to

depression? Did he give you any antidepressants while on tx? What were they?

Johanna

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

Johanna Koskinen - Director/Outreach Coordinator

Toll-free hotline:1.888.436.HEP C (4372)

Local: 1.816.763.4766/ Email: johanna@...

Website: http://www.hepcmo.org

[ ] Newbie

Hello all,

My name is Sharon. I'm 62, married and have had HCV since 1976. I

had an operation that year and lost a lot of blood, had transfusions

and received a hidden gift with the blood.

I was lill and tired for many years before a nurse practioner finally

did the right blood test and found HCV. I tried the Scherring Plough

treatment for 6 months and was clear, but relapsed 4 months later. I

started on Roche treatment, but only got through week 5. got quite

depressed and my doc stopped the treatment.

\SOOO I wait for the next generation of treatment, which I understand

is only montha away now. At least I hope so.

I'm chatty and LOVE jokes, and hope to get to know some of you.

Sharon

January 18, 2006

Hi Shaton welcome to the group. TerrySharon Crosby <blubirdxoxo@...> wrote: Hello all,My name is Sharon. I'm 62, married and have had HCV since 1976. I had an operation that year and lost a lot of blood, had transfusions and received a hidden gift with the blood.I was lill and tired for many years before a nurse practioner finally did the right blood test and found HCV. I tried the Scherring Plough treatment for 6 months and was clear, but relapsed 4 months later. I started on Roche treatment, but only got through week 5. got quite depressed and my doc stopped the treatment.\SOOO I wait for the next generation of treatment, which I understand is only montha away now. At least I hope so. I'm chatty and LOVE jokes, and hope to

get to know some of you. Sharon

January 18, 2006

Welcome Sharon, I'm sorry you weren't able to do the treatments. My name is and i am doing the interferon and Ribiveron treatment now. It has been very hard, but i am hanging in there. If you just need to talk e-mail me sometime and set up a time to chat. My e-mail address is Roninsbrn7@.... I too love to am chatty and love jokes. Sharon please tell us more about yourself. Do you work?I Just wanted to welcome you so keep in touch, Johanna <johanna@...> wrote: Welcome Sharon,Good to have you! We also have another board called, "Hep C Liver Pool" ifyou

need another place to hang out.Question:You say that you only got through week 5, and the doc took you off tx due todepression? Did he give you any antidepressants while on tx? What were they?Johanna---------------------------------------------------------------Johanna Koskinen - Director/Outreach CoordinatorToll-free hotline:1.888.436.HEP C (4372)Local: 1.816.763.4766/ Email: johanna@...Website: http://www.hepcmo.org -----Original Message-----From: [mailto: ] On Behalf Of Sharon CrosbySent: Tuesday, January 17, 2006 10:37 PM Subject: [ ] NewbieHello all,My name is Sharon. I'm 62, married and have had HCV since 1976. I had an operation that year and lost a lot of blood, had transfusions and received a hidden

gift with the blood.I was lill and tired for many years before a nurse practioner finally did the right blood test and found HCV. I tried the Scherring Plough treatment for 6 months and was clear, but relapsed 4 months later. I started on Roche treatment, but only got through week 5. got quite depressed and my doc stopped the treatment.\SOOO I wait for the next generation of treatment, which I understand is only montha away now. At least I hope so. I'm chatty and LOVE jokes, and hope to get to know some of you. Sharon

January 18, 2006

Hi Sharon I am Jan and if it's info you want this is the place to be but if it's jokes and a good laugh and ya want to vent then this is DEFINITELY the place to be..We do try to keep up everyone's spirits.I know I have had alot of good laughs in here..I have also vented alot too..Now as far as you stopping TX due to depression it does happen to alot ofus..Were you on anti depressants?? I know I had to be on some that knocked me out!! I only took TX a few months myself..Don't give up and you seem the type that wouldn't..There will be something out there soon..If ya need more info feel free to ask and send something funny..Hey it's nice meeting you!!Sharon Crosby <blubirdxoxo@...> wrote: Hello all,My name is Sharon. I'm 62, married and have had HCV since 1976. I had an operation that year and lost a lot of

blood, had transfusions and received a hidden gift with the blood.I was lill and tired for many years before a nurse practioner finally did the right blood test and found HCV. I tried the Scherring Plough treatment for 6 months and was clear, but relapsed 4 months later. I started on Roche treatment, but only got through week 5. got quite depressed and my doc stopped the treatment.\SOOO I wait for the next generation of treatment, which I understand is only montha away now. At least I hope so. I'm chatty and LOVE jokes, and hope to get to know some of you. SharonJan

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January 19, 2006

Thanks, TerryTerry Long <pawpawto3@...> wrote: Hi Shaton welcome to the group. TerrySharon Crosby <blubirdxoxo@...> wrote: Hello all,My name is Sharon. I'm 62, married and have had HCV since 1976. I had an operation that year and lost a lot of blood, had transfusions and received a hidden gift with the blood.I was lill and tired for many years before a nurse practioner finally did the right blood test and found HCV. I tried the Scherring Plough treatment for 6 months and was clear, but relapsed 4 months later. I started on Roche treatment, but only got through week 5. got quite depressed and my doc stopped

the treatment.\SOOO I wait for the next generation of treatment, which I understand is only montha away now. At least I hope so. I'm chatty and LOVE jokes, and hope to get to know some of you. Sharon

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March 10, 2006

Any advice on getting

> through meals with your sanity intact?

Hi, I am a newbie also. This is all new to me being that my son is 4

1/2. We have dinner madness also, just a different form. My son will

not sit at the table for more than a few minutes before he runs off to

do whatever just crossed his mind. What seems to work for me (it did

involve a few meltdowns) was I took his food from the table and

explained to him until I was blue in the face that we must sit and eat

at the table and when we are through eating, THEN we could get up.

Now when he goes to get up, we remind him that his food will not be

there when he comes back.

One other note- The house must be quiet when we sit at the table.

Sounds would distract him from eating.

Hope

March 10, 2006

Something that really helped Isaac when he was younger were visual warnings,

like flipping the lights on and off five minutes before we were going to start a

task. It gave him a visual that it would soon be time to start dinner, bath,

bed, etc. Sometimes he had melt downs when he saw the lights, but he was able

to get it out of his system before the actual activity. Once he got use to the

idea I would let him do the lights, which he thought was fun.

Just a suggestion...

Misty Gillispie

mlgillispie1980@...

( ) Re: Newbie