thanks to everyone who sent me coping skills at least i'm not alone

Mary Van Vliet <ismar822@...> wrote: Hi Nicole,
Thanks for writing back. You asked about my hubby's pain. Well, from what he
told me he has had arthritic joint pain since he was about 7 yrs. old.
Fortunately, so far, he has not had any joint replacement surgeries. He really
has no rememdies for it and has never taken prescription meds either. His mother
(who is 54) on the other hand has already had 2 replacememt surgeries on both
hips. Her second surgery was right about the time I met my hubby. Which made her
bed ridden for the first two weeks after. She was in pain as well for quite a
few months after. She seems to be doing fine now although it was almost ten
years ago since the surgery. Now she is just very careful to not fall and has
guidance walking down steps sometimes if she is nervous about falling.
I would like to send you some little advice I can think of. My hubby is a
musician and plays the saxophone and keyboard for personal pleasure. He tells me
that although he has a hard time moving or doing anything without pain he knows
its still important to keep his joints as active as possible to keep them from
stiffening up. Even if its a little here and there what ever you can do (safely)
do it. Beyond that... my final word would be to let your body take as much time
as possible to heal and try also to find relaxation techniquies like listening
to music or meditation.
That's all I can think of at this time. If you wish I can talk to my hubby
and maybe he can send you more info about him and how he copes with his
arthritis.
Take care and God Bless.
Mary


Nicole King <angeleyes2362901@...> wrote:
Hi I am Nicole Reichrath and I am 27 years old how does your hubby cope with
the joint pain and has he had any replacements i've had the l hip done will do r
in april i wanna know how to get my life back from this disease i also inherited
it from my moms side i am on meds but still in alot of pain

Mary <ismar822@...> wrote: Hi,
My name is Mary. My husband Isaiah and daughter Elizabeth (our only
child) are affected with Stickler Syndrome (which came from my mother
in-law's side of the family). My daughter who is 2 1/2 was born with a
cleft of her secondary palate and also has slight Pierre Robin
features. My husband suffers from arthitic joints (which makes playing
his beloved saxophone sometimes painful), complete blindness in his
right eye (due to Wagner Retinal Degeneration which is also a side
effect of Sticklers) and a tall and thin bone structure(he is 6'2" and
130 lbs). My daughter has no eye problems at this time but we are
getting eye check ups now once every 3 months since my husband's
parents think that is when he went blind. She has had her cleft repair
at 13 months of age Nov. 2004 and still has ear tubes in place. Beyond
all that she is a happy, healthy, and well adjusted child. She has some
speech delays in which she is currently getting therapy support. She
love music, Legos, coloring, and every single one of her stuffed
animals.
Thanks for reading my intro. Hope to get to know many others in this
group soon.
Many blessings to all.







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