| Author |
Mother of young sufferer
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| suzidingle@aol.com 2005-04-24, 8:45 am |
| I am the Mother of "Green" who posted under the topic young sufferer.
I want to be able to support her and try to understand the nature of
this beast. I am a nurse and know somewhat of the process, yet when it
touches someone you love an illness such as this really can knock the
wind out of you.
Does anyone have any suggestions for reading? I just shipped my
daughter a book called Rheumatoid Arthritis: The Infection Connection.
I'd appreciate any feedback as to what I can purchase to educate myself
in this area.
Does RA tend to be cyclitic in nature? Could I have passed this on to
her? I have been very ill with a clinical diagnosed case of Lyme
Disease. Her brother has a high lyme count as well. I am concerned
with how far this will go degeneratively. My daughter is a beautiful
person both inside and out. She has been dealing with this alone and I
want her to know how much she needs support. Thanks to boards like
these that allow us to share feelings and concerns. Knowing the
medical world we generally do not find compassion in those who are
suppose to care for us. Until you read someone else who is enduring
the same as you do only then do you feel less alone. So thanks for all
your input. And thanks for supporting my daughter in answering her
postings. God bless all.
Any news in stem cell work? Or has the Bush team taken that off the
table?
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| greenknees 2005-04-25, 11:45 am |
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I was diagnosed with JRA at 5 years of age. am now in my 40's and have
been in an out of remission many MANY times. Was tested for lyme.
Didn't have that. It seems doctors don't believe it really can happen
to children. Been there many times with several doctors. I did feel
very alone as a kid with JRA I palyed in a world all of my own with my
Dawn dolls. Some may remember them form the 1970's Dawn was made in
the simitude of a smaller barbie doll. (Though it is sacralidge to say
that in front of the dawn collectors) Dawn was made with a faulty metal
mecanisim in her knees that turned the joint green. In my young mind
Dawn also suffered JRA. Me with several "knee drainings" also had
"green, (bruised) knees" Dawn was my best friend and the ONLY one as
far as I was concerned that really understood. Besides my mother. To
this day I have and love my dawn dolls. They are still on display with
their knees "bandaged" just like mine. I am an avid Dawn doll
collector even now. When the pain gets really bad you can find me
curled up in the bed with a dawn in my hand. It's somehow comforting.
My screen name "greenknees" means just that. Just like dawn I suffer
the adult form of JRA. My mom has long forgot my pain due to
alsheimers. But Dawn will always remember.
Teresa aka greenknees
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| Harvey R. Stone 2005-04-25, 5:45 pm |
|
When the pain gets really bad you can find me
> curled up in the bed with a dawn in my hand. It's somehow comforting.
> My screen name "greenknees" means just that. Just like dawn I suffer
> the adult form of JRA. My mom has long forgot my pain due to
> alsheimers. But Dawn will always remember.
>
> Teresa aka greenknees
>
and you are welcome here and in news:alt.support.arthritis .
Harv
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| Hi Greenknees
My name is Jackie and I too had Juvenile Arthritis at age 6. It started in
my knees which became swollen and red and painful. Our doctor said it was
growing pains and told my mother to bathe me in salt water!!!!
At age 9 I was sent to Chailey Heritage which is a school and hospital in
Sussex. By this time my whole body was ridgid and the flare ups like a
fever and the joints excrutiating. I had no pain relief and very little
treatment except for physio.This school was for children with disabilities
of all kinds and they were very tough on us.
We had to get around ourselves and so were tipped out of our wheelchairs and
if we couldn't get to the dining room - we didn't eat!
We were expected to participate in several sports - tennis, badminton,
netball and as the school was 'open air' we were out in the open all the
time except when it rained.
We even slept outside with a waterproof cover over the top of us.
The cold was not good for me though I have been extremely healthy in all
ways except the arthritis - until now.
I was born in 1938 so am now 66. I have had a job all my life though I
did have to retire about 6 years early.
I have had 7 replacement hip joints and last year a knee replacement.
That school nearly killed me but it made me very tough too. I have been
married for 42 years, had three children and now have 5 grandchildren.
No one else in my family except an aunt had RA.
I was lucky that my RA more or less burnt out when I was about 14 years old
and they were trying me out on Butazolodine (now called Phenobutazone, (they
only give it to horses now I understand)).
I have an occasional flare up in one knee (the one replaced last year - and
yes it still flares) and the Rhaumatologist tells me my blood shows RA.
(I have Osteo Arthritis now and all my joints are affected but I have good
hands and my fingers work well which is unusual. Fingers were rigid at one
time and I had hot wax treatment on them, so I suppose that is what made
them better?
There wer no drugs for arthritis in my day, Mum used to give me an asprin
occasionally, but away at school I had nothing.
I am still angry about my childhood which was completely lost and cannot
talk about it because I become very emotional.
So this is the most anyone has every heard about it.
If I can help anyone, let me know.
jackie
"Harvey R. Stone" <none@nobody.net> wrote in message
news:Jlbbe.299$461.272@newssvr11.news.prodigy.com...
>
>
> When the pain gets really bad you can find me
>
> and you are welcome here and in news:alt.support.arthritis .
>
> Harv
>
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| greenknees 2005-04-26, 8:45 am |
| Dang Jackie. What a truely awful childhood.
I was in and out of hospitals so much that it put me behind in school.
I was always in special classes but not like yours. In the 60's when I
was a kid the only treatment for JRA was asprin and antibiotics.
Travesty. And you still have flairs even with your knee replacement?
Damn.
Thank you for sharing your childhood experience for the very first
time. I too have a hard time talking about mine to people. Mostly
because healthy people cannot understand the trauma I went thru as a
kid. And now.
Blessings to you my dear.
Teresa
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