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Medical Forum / Diseases and Disorders / Arthritis / June 2005

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Spouse of AS,CIDP,shingles,lack of sleep sufferer

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K H - 03 Jun 2005 22:48 GMT
My Husband is in pain almost constantly, he's allergic to NSAIDS so he's on
the heavy duty stuff.  He can only get a couple of hours a sleep at any
given time. He Naps throughout the day and evening.   He's 54, I'm 52,  Our
kids are grown and gone.  I'd love to find a job, I've been self employed
for 24 years, but we moved to a "Dry " State for his health, and now I can't
find work. I'm in good health, and  I'm going stir crazy,

We are in the process of selling our home to downsize, He's on disability.
I love him to death.

We are not the "TV"  Empty nesters that can just pick up and go.  He never
feels good enough to want to do anything any more and it's scaring me to
death that I'll be sitting around cleaning or piddling for the rest of my
life.   I know you'll say get a hobby, I have several but you can only do
that for so long too.  I volunteer as needed locally but it's only for a few
hours at best during the week.

Some days I just drive around, have a good cry and then come back home.  If
anyone can share their coping techniques I'd appreciate it, I'm tapped out.
Kathy
Jo Firey - 04 Jun 2005 00:03 GMT
> My Husband is in pain almost constantly, he's allergic to NSAIDS so he's
> on
[quoted text clipped - 22 lines]
> out.
> Kathy

Well my sister works in the garden department of her local Wal-Mart.  Just
to get out of the house.  And says otherwise she would likely kill her
spouse.  He's a nice guy and they get along great, but there is such a thing
as too much togetherness.

If you can get him out of the house at all, even to just go for a ride, it
would help you feel less trapped.  It you can't, then you have to find
things to do.

If you need to be home with him, then there is reading, knitting, the
computer, gardening, coffee with the neighbors, etc.  Extra long trips to
the grocery store.

If he is truly home bound, you might even consider placing him in respite
care for a few days once in a while and getting out of town.

May towns have Senior Centers that plan trips to gardens and wineries and
casinos and such.  He might be able to cope with that.

Also, get yourself into a caregivers support group so you will have someone
to talk to in a similar situation..

If he is keeping you awake you will have to make it clear that just because
he can't sleep doesn't mean you don't have to.

And get in to see the doctor yourself to make sure you aren't clinically
depressed in addition to being tired.  If you are treatment can make all the
difference in the world.

Jo
K H - 05 Jun 2005 20:09 GMT
Jo,  thanks for all the great idea's,  I never even thought of myself as
clinically depressed.  I just happen to be seeing my doctor this week, I'll
ask her what she thinks!
Kathy

>> My Husband is in pain almost constantly, he's allergic to NSAIDS so he's
>> on
[quoted text clipped - 55 lines]
>
> Jo
Harvey R. Stone - 04 Jun 2005 01:56 GMT
Hi Kathy,,,  I just wanted to say that having the feeling and worries you
have     is     normal.
   What kind of arthritis does your husband have and what does he take for
it?

Harv

> My Husband is in pain almost constantly, he's allergic to NSAIDS so he's
> on
[quoted text clipped - 22 lines]
> out.
> Kathy
K H - 04 Jun 2005 03:14 GMT
He has AS (Ankylosing Spondylitis) He's had this since the age of 9 but was
miss diagnosed as RA, until he was into his 30's,    He can't take NSAIDS,
or prednisone, so he's on Oxycontin and Ultram, with a host of other drugs
for the other problems that he suffers with.     With the autoimmune system
being down he's now developing a host of other diseases.
    Thanks I know it's normal.  Just some days I really think it's harder
on me than him because I can't take drugs and nap!   Nor do I want to.   We
already sleep in separate rooms because I'm a very light sleeper and every
time he'd get up or come to bed he'd wake me up.  This was affecting my
health.

K

> Hi Kathy,,,  I just wanted to say that having the feeling and worries you
> have     is     normal.
[quoted text clipped - 31 lines]
>> out.
>> Kathy
Harvey R. Stone - 04 Jun 2005 13:44 GMT
> He has AS (Ankylosing Spondylitis) He's had this since the age of 9 but
> was miss diagnosed as RA, until he was into his 30's,    He can't take
[quoted text clipped - 8 lines]
>
> K

Hi K,,,, You will see many posts in this newsgroup from Firechief,,,, AS.
Retired, does not drive anymore but he square-dances and remarried a couple
of years back.    They have found Enbrel and Remicade  to work really well
for people with AS.  The thing about RA and AS is what it takes from you,,,
you can not get back.   If your guy has passed the point with his back,,,,
what he takes and how interesting life is in your hands and his own.   I
know that you could write a book on how to live with a person with AS.
When it gets to you a little,,,, just come here and let it all go.   Yes,,,,
we have heard it all a hundred times before buttttttt not from you.  You and
your guy are why we come here to talk about life and how to live with what
we have.
Harv
K H - 05 Jun 2005 20:09 GMT
Harv,
your right about the book thing!    I guess that I'm just in that place now
where I need to get it off my chest with people who understand.

Our story is long He's had AS since childhood, of course if was misdiagnosed
for a long time but by then the damage was done. He's 55 this year!

I will use this site and vent or seek support when needed.  Thanks Harv!
Kathy

>> He has AS (Ankylosing Spondylitis) He's had this since the age of 9 but
>> was miss diagnosed as RA, until he was into his 30's,    He can't take
[quoted text clipped - 22 lines]
> and how to live with what we have.
> Harv
d'huit - 04 Jun 2005 07:35 GMT
> My Husband is in pain almost constantly, he's allergic to NSAIDS so he's
> on
[quoted text clipped - 22 lines]
> out.
> Kathy

hi kathy!  sounds like you have the time on your hands, but not the
opportunity to do more than you are doing.  i think i'd suggest that you
start making friends with neighbors and with other volunteers.  you could
use some girlfriends, girlfriend!  go out to lunch once in awhile with a
girlfriend.  also, this might set up a networking kind of thing for you, as
one of these friends might just know somebody who knows somebody who needs
somebody with your job skills.

if hubby can't go out, considering his condition and his meds, maybe
something like hosting a weekly or monthly cardgame/scrabblegame/boardgame
at your house, with another couple (maybe neighbors) might help both of you
have something to look forward to together.  make it pot luck or just after
dinnertime for dessert.

checking out the local senior centers has been mentioned, but there is also
county parks and recreation centers that have outings/daytrips you can go on
and classes in new and interesting things, not just hobbies, as well as
exercise programs.

if you do happen to be depressed, which would be normal and typical in a
situation like this, there are many effective ways of handling it.  there
are varying degrees of depression.  everybody's different and people find
different ways of coping and dealing with and facing situations like this.
however, the least effective thing to do, about it, is to do nothing.

hope there's an idea or two on this thread you can make use of, kathy.

kate
K H - 05 Jun 2005 20:03 GMT
Thanks for the suggestions, you mentioned a few that I hadn't thought of!
Yes I do need girlfriends,  When we moved to Phoenix I worked in our home
office for 5 years and now it's hard getting to know people.    I'm working
on that now!

Kathy

>> My Husband is in pain almost constantly, he's allergic to NSAIDS so he's
>> on
[quoted text clipped - 53 lines]
>
> kate
firechief - 05 Jun 2005 03:17 GMT
> My Husband is in pain almost constantly, he's allergic to
> NSAIDS so he's on the heavy duty stuff.  He can only get
> a couple of hours a sleep at any given time.

Except for the allergy to NSAIDs, you pretty much described
me.  I was diagnosed with AS in 1976-77.  Took up square
dancing for exercise until I had to stop driving.  During that
time I had a THR which eliminated the waking up every 1-2
hours.  Now I sleep through 6-8 hours and I've been back
to square dancing since 2001.

You didn't mention WHERE your husband's pain is.  Back?
Hips?  Shoulders?

You also didn't mention your location, so we may be able
to steer you to some suppost group(s).

In the meanwhile, you could visit http://www.kickas.org
and http://www.spondylitis.org.

... LET THERE BE DARK!    No, that's not right.
K H - 05 Jun 2005 20:03 GMT
We Moved to Arizona in 1998, from the Midwest, St. Louis,   The dry desert
air is fine, his pain is in all area's hips (one replased in 2000, shoulders
(has had 3 surgeries) back - upper Middle and lower, Knees. Hands etc.
He played racketball but can't do that any longer  because of the hip
replacement.  has reverted to walking the dog an a little bike riding.

If anyone knows of a group in Phoenix area who likes to "Do Lunch" let me
know!
I have visited these other websites but not recently. Thanks for the
reminder.

Thanks
Kathy

>> My Husband is in pain almost constantly, he's allergic to
>> NSAIDS so he's on the heavy duty stuff.  He can only get
[quoted text clipped - 17 lines]
>
> ... LET THERE BE DARK!    No, that's not right.
firechief - 06 Jun 2005 06:23 GMT
Kathy wrote:

> If anyone knows of a group in Phoenix area who likes to
> "Do Lunch" let me know!

Okay, where's Anne?  She's in Phoenix.  Didn't want to
receive e-mail.....but.

Meanwhile, I'll check around some more.

... I don't eat snails.   I prefer fast food.
 
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