Stacy,

Go with your gut.  See how things go with this change of tactics and if
you need to, make adjustments.  Definitely, don't punish yourself--you
don't want to set that example!

-K

Dear Stacy,

I, too, am proud of you for your post.  I actually had to send my three
step-kids to their grandmother's house for the last two weeks (ages 16,
14 and 12).  I have been having a very bad flare - one of my worst -
and I knew that I didn't have the energy or temperment to care for
them.

It was VERY hard in the years that I went undiagnosed (I went to
doctors since I was 20 - finally got diagnosed at 43, we're quite sure
that I have had AS since I was 8).  I was raising my own 6 children
then, 8 of those years as a single mom, and all I was giving by the
doctor was one type of anti-depressant after another.  (I never got the
connection as to how they were going to make my back feel better!)  My
children definitely suffered at times, especially during the later
years as my disease progressed.  I would work a 12 hour shift at the
hospital, and then literally have to crawl up the stairs at my house,
recover for a couple of days, and then back to work.  It's hard, if not
impossible, to be really tuned into your kids when it takes all your
energy just to move, and the searing pain that goes with it when things
are bad.

If you can, find a psychotherapist who deals with pain patients that
you get along with and listen to her (him)!  It took several months of
therapy before I finally started understanding how well I had done
under the circumstances, and began to forgive and love myself again.
It was also a breakthrough to learn that my husband and children really
love ME - I felt so useless and unlovable because of my illness.

I also had to learn (and this is a constant struggle) to prize the time
that I DO have.  I complained to her that even at the best times that I
only have about 8 hours a day out of bed.  Her response was how
wonderful this was - especially since I'm not working now - think of
how many people would give anything to have this much time!

This is important to remember in our relationships.  Maybe you can't
give your son 6 or 8 hours every night after school where you are fully
engaged.  However, can you commit to 30 straight minutes?  How about
15?  Later in the day, maybe you can give another 15 - or even 5.  It
is truly amazing how much influence we can have for good on our
children even if it can be in just small bites.  Don't try to cram 8
hours of loving into those 30 minutes - just relax and let what
happens, happen, but make sure it is positive for both of you.

That means setting limits for you, too, to make it a comfortable time
for you.  For instance, carrying a child or having him sit on your lap
can be excruciating.  But is there room on your couch to have him lay
next to you while you watch your favorite cartoon?  (It was rugrats for
my youngest son and me.)

Good luck, and bless you in your efforts.  And be grateful you have
parents who can help you sometimes - how fortunate you are!

--- In Spondyville@yahoogroups.com, "Stacy" <stacywexler@...> wrote:
>
> Jake has been with my parents for one week with no signs of
> depression.  He needs no medicine.  He needs more love and attention
> from me when he feels well.  I have made a new plan of action and
have
> had time to reflect on how different I treat him when he is sick.  He
> does not need physch meds, just more of what he's not getting at
> home.  I am not punishing myself or trying to feel sry for myself.  I
> just believe this is the truth.  I also decided to put of my
> hysterectomy until the end of May when Jake is done with school and
he
> can go to NJ and be with my father and my mom can come to FL and be
> with me. I do not think he needs to see me sick anymore!!!!
> Take Care
> Stacy
>

I agree with everything that Spenser has stated. Stacy I think that you are
on the right track. It is probable that Jake magnifies his pain to get your
attention. Your recognition of this fact is a big leap forward.

Maggie

-------Original Message-------

From: spenser23as
Date: 1/04/2007 5:45:46 AM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] Re: More Stuff About Jake

Stacy, I think you showed a lot of courage in writing your last message
and sharing it with all of us. It's not easy facing what may be a hard
truth, especially about ourselves. You chose to face things head-on,
and made some decisions which must be painful. Try not to be too hard
on yourself. Your intentions for Jake, were always, and continue to
be, I believe, for the best. To my mind, the fact that you are now
doing what you are doing, only reinforces that.

I wish you all good things,

Spenser23as





[Non-text portions of this message have been removed]

Good luck with your new support group, Joan. I live on the other side of the
mountains (Issaquah), so it would be a bit far for me to drive, but I'll be
thinking good thoughts that the group is successful, fun, supportive and
informative.

Tyler :-)





>From: "joanp115" <joanp115@...>
>Reply-To: Spondyville@yahoogroups.com
>To: Spondyville@yahoogroups.com
>Subject: [Spondyville] New Support Group in Spokane, Washington
>Date: Fri, 30 Mar 2007 22:22:48 -0000
>
>Eastern Washington and Northern Idaho and surrounding areas now have a
>new support group for those with ankylosing Spondylitis!  The
>Spondylitis Association of America has just approved this group and we
>will be having our first meeting May 26th (Sat.) in Spokane.  Contact
>me if you are interested! Looking forward to hearing from you.  Joan
>

Stacy, I think you showed a lot of courage in writing your last message
and sharing it with all of us. It's not easy facing what may be a hard
truth, especially about ourselves. You chose to face things head-on,
and made some decisions which must be painful. Try not to be too hard
on yourself.  Your intentions for Jake, were always, and continue to
be, I believe, for the best. To my mind, the fact that you are now
doing what you are doing, only reinforces that.

I wish you all good things,

Spenser23as

Stacy, I'm glad you've had the opportunity to do some soul searching while
Jake is with your parents. Sometimes it is very difficult to take time for
yourself when there's a child in the home who needs extra attention. I think
you have a good idea in perhaps changing your approach with Jake. I applaud
your courage :-)

Tyler





>From: "Stacy" <stacywexler@...>
>Reply-To: Spondyville@yahoogroups.com
>To: Spondyville@yahoogroups.com
>Subject: [Spondyville] More Stuff  About Jake
>Date: Sat, 31 Mar 2007 12:32:49 -0000
>
>Jake has been with my parents for one week with no signs of
>depression.  He needs no medicine.  He needs more love and attention
>from me when he feels well.  I have made a new plan of action and have
>had time to reflect on how different I treat him when he is sick.  He
>does not need physch meds, just more of what he's not getting at
>home.  I am not punishing myself or trying to feel sry for myself.  I
>just believe this is the truth.  I also decided to put of my
>hysterectomy until the end of May when Jake is done with school and he
>can go to NJ and be with my father and my mom can come to FL and be
>with me. I do not think he needs to see me sick anymore!!!!
>Take Care
>Stacy
>

Stacy,

It sounds as if you do have a plan. I have a chronically ill daughter, who is 9.
(not AS) and I think I understand what you are saying. I wish all the best for
you and Jake.

Crystal


----- Original Message ----
From: Stacy <stacywexler@...>
To: Spondyville@yahoogroups.com
Sent: Saturday, March 31, 2007 7:32:49 AM
Subject: [Spondyville] More Stuff About Jake

Jake has been with my parents for one week with no signs of
depression. He needs no medicine. He needs more love and attention
from me when he feels well. I have made a new plan of action and have
had time to reflect on how different I treat him when he is sick. He
does not need physch meds, just more of what he's not getting at
home. I am not punishing myself or trying to feel sry for myself. I
just believe this is the truth. I also decided to put of my
hysterectomy until the end of May when Jake is done with school and he
can go to NJ and be with my father and my mom can come to FL and be
with me. I do not think he needs to see me sick anymore!!!!
Take Care
Stacy






________________________________________________________________________________\
____
No need to miss a message. Get email on-the-go
with Yahoo! Mail for Mobile. Get started.
http://mobile.yahoo.com/mail

[Non-text portions of this message have been removed]

Jake has been with my parents for one week with no signs of
depression.  He needs no medicine.  He needs more love and attention
from me when he feels well.  I have made a new plan of action and have
had time to reflect on how different I treat him when he is sick.  He
does not need physch meds, just more of what he's not getting at
home.  I am not punishing myself or trying to feel sry for myself.  I
just believe this is the truth.  I also decided to put of my
hysterectomy until the end of May when Jake is done with school and he
can go to NJ and be with my father and my mom can come to FL and be
with me. I do not think he needs to see me sick anymore!!!!
Take Care
Stacy

Congratulations Joan! And good luck with your new AS Support group in
Spokane!

Spenser23as

I don't need to walk around the house as I go work out 3 times a week.  My work
outs are monitored by RN's and exercise specialists.  Its great.

Ann
   ----- Original Message -----
   From: Maggie
   To: Spondyville@yahoogroups.com
   Sent: Friday, March 30, 2007 7:54 PM
   Subject: Re: [Spondyville] Re: Knitting - for Kathryn


   Can I suggest that when you get sore that you take a walk around the house
   and the garden. In this way you will benefit from a bit of exercise.

   So far I have not hit the tatting or the bobbin lace. I am into the baby
   booties and beanies.

   Maggie

   -------Original Message-------

   From: Ann
   Date: 31/03/2007 8:15:50 AM
   To: Spondyville@yahoogroups.com
   Subject: Re: [Spondyville] Re: Knitting - for Kathryn

   I quilt for relief. Its great. I pump out a ton of quilts. I cut for a bit,
   when I am tired of standing I sit and sew. When I get tired of sitting or
   get sore, I stand and cut another block or two...

   I am more then willing to help anyone if they want help.
   Ann
   ----- Original Message -----
   From: Maggie
   To: Spondyville@yahoogroups.com
   Sent: Thursday, March 29, 2007 8:58 PM
   Subject: [Spondyville] Re: Knitting - for Kathryn

   -------Original Message-------

   From: Kathryn
   Date: 29/03/2007 10:10:40 PM
   To: Spondyville@yahoogroups.com
   Subject: [Spondyville] Re: you won't believe this one
   Hi Kathryn,

   The benefits of knitting and crochet, as well as any craft is that sense of
   accomplishment when the project is completed. I have been knitting since I
   was around 5 years old. My sister taught me to knit before I went to school.
   I have been crocheting since the age of 16. In fact I went on to learn to
   tat and do bobbin lace. I have also managed to do a few projects in counted
   cross stitch.

   I find that I can sit for around 1 hour and then I must move - hence I walk
   around the pool at home for exercise, and continue to knit. One of the
   really good benefits happens to be that my focus is being taken away from
   eating and that gives me a better chance to lose weight. I can boast of a 7
   kg weight loss since I took out the knitting needles in November.

   Also, much to my husband's amusement, I knitted in the car during our trip
   to Melbourne. I managed to finish 1 bootie per 300 kilometres. My husband is
   the one who was telling people this "statistic". The bootie was complete to
   the stage of being sewn up and the crochet cord was also made.

   I have just branched into making some beanies. They take less time to
   complete but there are more stitches on the needle. Either way, I believe
   that I can sell these items.

   Maggie

   Maggie,

   Good points.

   And now I will completely derail the conversation by going off on a
   tangent because you mentioned...knitting!

   I've been doing it for a few years now and it's definitely one of the
   things that makes life bearable (in addition to chocolate and my
   husband...98% of the time). I haven't yet felt confident enough to
   try something like booties or socks. Mostly I've done scarves and
   lately I learned how to do hats. I just have to remember to be good
   and not sit there for too long without stretching.

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   [Non-text portions of this message have been removed]

   [Non-text portions of this message have been removed]





   [Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

Can I suggest that when you get sore that you take a walk around the house
and the garden. In this way you will benefit from a bit of exercise.

So far I have not hit the tatting or the bobbin lace. I am into the baby
booties and beanies.

Maggie

-------Original Message-------

From: Ann
Date: 31/03/2007 8:15:50 AM
To: Spondyville@yahoogroups.com
Subject: Re: [Spondyville] Re: Knitting - for Kathryn

I quilt for relief. Its great. I pump out a ton of quilts. I cut for a bit,
when I am tired of standing I sit and sew. When I get tired of sitting or
get sore, I stand and cut another block or two...

I am more then willing to help anyone if they want help.
Ann
----- Original Message -----
From: Maggie
To: Spondyville@yahoogroups.com
Sent: Thursday, March 29, 2007 8:58 PM
Subject: [Spondyville] Re: Knitting - for Kathryn

-------Original Message-------

From: Kathryn
Date: 29/03/2007 10:10:40 PM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] Re: you won't believe this one
Hi Kathryn,

The benefits of knitting and crochet, as well as any craft is that sense of
accomplishment when the project is completed. I have been knitting since I
was around 5 years old. My sister taught me to knit before I went to school.
I have been crocheting since the age of 16. In fact I went on to learn to
tat and do bobbin lace. I have also managed to do a few projects in counted
cross stitch.

I find that I can sit for around 1 hour and then I must move - hence I walk
around the pool at home for exercise, and continue to knit. One of the
really good benefits happens to be that my focus is being taken away from
eating and that gives me a better chance to lose weight. I can boast of a 7
kg weight loss since I took out the knitting needles in November.

Also, much to my husband's amusement, I knitted in the car during our trip
to Melbourne. I managed to finish 1 bootie per 300 kilometres. My husband is
the one who was telling people this "statistic". The bootie was complete to
the stage of being sewn up and the crochet cord was also made.

I have just branched into making some beanies. They take less time to
complete but there are more stitches on the needle. Either way, I believe
that I can sell these items.

Maggie

Maggie,

Good points.

And now I will completely derail the conversation by going off on a
tangent because you mentioned...knitting!

I've been doing it for a few years now and it's definitely one of the
things that makes life bearable (in addition to chocolate and my
husband...98% of the time). I haven't yet felt confident enough to
try something like booties or socks. Mostly I've done scarves and
lately I learned how to do hats. I just have to remember to be good
and not sit there for too long without stretching.

Change settings via email: Switch delivery to Daily Digest | Switch format
to Traditional
Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe Recent Activity
1New Members
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SPONSORED LINKS
Ankylosing spondylitis
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[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

Eastern Washington and Northern Idaho and surrounding areas now have a
new support group for those with ankylosing Spondylitis!  The
Spondylitis Association of America has just approved this group and we
will be having our first meeting May 26th (Sat.) in Spokane.  Contact
me if you are interested! Looking forward to hearing from you.  Joan

I quilt for relief.  Its great.  I pump out a ton of quilts.  I cut for a bit,
when I am tired of standing I sit and sew.  When I get tired of sitting or get
sore, I stand and cut another block or two...

I am more then willing to help anyone if they want  help.
Ann
   ----- Original Message -----
   From: Maggie
   To: Spondyville@yahoogroups.com
   Sent: Thursday, March 29, 2007 8:58 PM
   Subject: [Spondyville] Re: Knitting - for Kathryn




   -------Original Message-------

   From: Kathryn
   Date: 29/03/2007 10:10:40 PM
   To: Spondyville@yahoogroups.com
   Subject: [Spondyville] Re: you won't believe this one
   Hi Kathryn,

   The benefits of knitting and crochet, as well as any craft is that sense of
   accomplishment when the project is completed. I have been knitting since I
   was around 5 years old. My sister taught me to knit before I went to school.
   I have been crocheting since the age of 16. In fact I went on to learn to
   tat and do bobbin lace. I have also managed to do a few projects in counted
   cross stitch.

   I find that I can sit for around 1 hour and then I must move - hence I walk
   around the pool at home for exercise, and continue to knit. One of the
   really good benefits happens to be that my focus is being taken away from
   eating and that gives me a better chance to lose weight. I can boast of a 7
   kg weight loss since I took out the knitting needles in November.

   Also, much to my husband's amusement, I knitted in the car during our trip
   to Melbourne. I managed to finish 1 bootie per 300 kilometres. My husband is
   the one who was telling people this "statistic". The bootie was complete to
   the stage of being sewn up and the crochet cord was also made.

   I have just branched into making some beanies. They take less time to
   complete but there are more stitches on the needle. Either way, I believe
   that I can sell these items.

   Maggie




   Maggie,

   Good points.

   And now I will completely derail the conversation by going off on a
   tangent because you mentioned...knitting!

   I've been doing it for a few years now and it's definitely one of the
   things that makes life bearable (in addition to chocolate and my
   husband...98% of the time). I haven't yet felt confident enough to
   try something like booties or socks. Mostly I've done scarves and
   lately I learned how to do hats. I just have to remember to be good
   and not sit there for too long without stretching.

   Change settings via email: Switch delivery to Daily Digest | Switch format
   to Traditional
   Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe Recent Activity
   1New Members
   Visit Your Group
   SPONSORED LINKS
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   Coolest Hair
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   Share and vote
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   Daily count down
   of top Web finds.
   Yahoo! Groups
   Start a group
   in 3 easy steps.
   Connect with others..



   [Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

I have just taken a long car trip, from Sydney to Melbourne and back again.
I have a wire back support that I use on my chairs at home. I took it on the
same trip last year but we were in a different car. The Ford Territory was a
bit rough on the roads but my overall comfort was ok. My husband has a
tendency to travel for more than 2 to 3 hours at a time and I did not get
adequate stretch time. When I reached our overnight destination I was
extremely stiff and barely able to move, so I took off with the walking
stick and walked for almost an hour. I took my time with the walking but I
was happy to be able to do that time.

It was not until we had returned home and into this week that I really began
to feel extremely stiff and sore. I have been stiffening again in the
mornings. I find that my pool time is just what I have needed.

On the up side of this saga is the fact that my weight is starting to take
another tumble. I was pleased to discover that I did not put on much weight
during the "festivities" in Melbourne, and for a few days I noticed small
increases, but in the last 2 days there has been a drop of about 2.8 kg. I
hope that I can improve upon that figure.

I purchased the wire back support here in Sydney. The article is made in
China and the company does not normally sell the product. They do not have
any more stock of the item. I wish that I had purchased a second one at the
time when I saw it for the first time so that I have one in the car and one
for home.

Maggie

-------Original Message-------

From: carriehockett
Date: 31/03/2007 12:07:40 AM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] Re: Travel Safety, Spine Brittleness

Yes, in advanced AS your spine itself can become brittle, in addition
to all the other trouble it has caused you. Fortunately this can be
easily assessed via a bone density scan (also called a DEXA scan).
Your rheumatologist will probably want a report that specifies bone
density at each vertebrae, not just a composite score.

The Spondylitis Assoc. of America has a feature article on car travel
and AS that you can access for free at
http://www.spondylitis.org/sp/sample.pdf

Unless advised otherwise by your doc, flying shouldn't be considered
any more dangerous than riding in your car. However, the jostling on
a bad ride can be painful, both at the time and for days after (esp.
combined with a bad hotel mattress!) I fly at least twice a month so
I deal with this frequently. My doc prescribes flexeril for me to
take on plane rides so that my muscles will relax -this averts a lot
of the pain, since most of it is cramp and spasm related. I also try
to get a massage on both legs of the trip within 48 hours of the
flight. Since I'm a cheapskate I'll usually contact a gym or a
chiropractor's office to schedule rather than a hotel spa which is
twice the money (but oh, so luxurious!)

Sorry about the sleepless nights. I go through those too, about a
week at a time if my joints are acting up. I try to stay as warm as
I can without breaking into a sweat. I also have a long-lasting
sleeping pill that is supposed to carry me through the night, this
helps most nights. (In case there are any anti-druggies on this
site, I am way past that point, I've had AS since I was 8 years
old.) I recently bought a "bed buddy" - a cloth tube filled with
some type of grain that you heat in the microwave. This has helped a
lot, since the heat holds for quite a while, and the slight pressure
from the weight helps too.

I haven't thought about the hot tub before - I climb into mine on
days that I can't get moving... I've never thought about the
possibility of rebound pain from it. Does anyone else have thoughts
on this?

--- In Spondyville@yahoogroups.com, "Jim Stevely" <jstevely@...>
wrote:
>
> Thanks, Spenser that's what Physio has told me to, I used to be
involved in
> a lot of sports, and am afraid to do anything physical anymore.
Physio is
> saying that the maximum exercising I should do is swimming, walking
and the
> few stretching exercises that she gave me to do. I have even
noticed that if
> I stay in a hot tub to long or get to close to the jets that I pay
for it.
> It might feel good at the time but it's the day after up to a week
that I
> hurt big time. I am even having 2nd thoughts on flying now as when
the plane
> hit turbulence and the plane side shifts so does parts of my
spine.. it sure
> is a scary odd feeling.. Do your bones get brittle with AS and is
it easier
> to break your spine? Am feeling a bit better at least I have been
able to
> sleep a bit and move in my sleep without waking up.. was a horrible
one last
> week.. lol
>
> JS
>
> -----Original Message-----
> From: Spondyville@yahoogroups.com
[mailto:Spondyville@yahoogroups.com]On
> Behalf Of spenser23as
> Sent: Wednesday, March 28, 2007 12:46 AM
> To: Spondyville@yahoogroups.com
> Subject: [Spondyville] Re: Jim
>
> One word of warning about exercising at gyms and fitness centers;
> Remember that the people there are most likely not at all familiar
with
> AS or what your limitations may be. DO NOT listen to them if they
tell
> you the old, "NO PAIN, NO GAIN" advice. That may be true for
> bodybuilders and people without chronic conditions, but it is not
good
> advice for us. Do not listen if they insist you go beyond what you
> know to be your strength limits or beyond the range of motion in
your
> joints. They will think they are being encouraging and supportive,
> when, they could be doing you real damage or triggering a flareup.
> Stay within yourself, and don't overdo. Use light weights, rather
than
> heavy and work for reps rather than poundage. Remember, your main
goal
> is to work on your posture, flexibility and range of motion. For a
lot
> of people, bulking up with heavier weights often works against
> maintaining flexibility and range of motion.
>
> Just something to think about.
>
> Spenser23as
>
>
>
> [Non-text portions of this message have been removed]
>





[Non-text portions of this message have been removed]

April Fool's weekend?! Maybe so, but it's NO joke that the Spondy
Cafe Chat will be meeting as always!

Our regular weekly Spondy Cafe chat session, is held each and every
Saturday morning at 10AM Eastern time (7AM Pacific). The Spondy Cafe
has been meeting regularly online since 1995.

To get to the Spondy Cafe: go to the Spondyville.com main page (Main
Street) and click on the "blue diamond" icon for "Spondy Cafe" ...
when prompted, enter your screen name, and then click on the button
and you will be taken to the chat room.

To get to the Spondyville main page, use this link:
http://spondyville.com/Page14.html

Or you can use this link to go directly to the chat room sign-in:
http://spondyville.com/page47spondycafe.html

Again, the chat will take place on Saturday morning at 10AM EASTERN
time. (9AM Central, 8AM Mountain, 7AM Pacific time.)

I hope to see YOU there!

Spenser23as

Yes, in advanced AS your spine itself can become brittle, in addition
to all the other trouble it has caused you.  Fortunately this can be
easily assessed via a bone density scan (also called a DEXA scan).
Your rheumatologist will probably want a report that specifies bone
density at each vertebrae, not just a composite score.

The Spondylitis Assoc. of America has a feature article on car travel
and AS that you can access for free at
http://www.spondylitis.org/sp/sample.pdf

Unless advised otherwise by your doc, flying shouldn't be considered
any more dangerous than riding in your car.  However, the jostling on
a bad ride can be painful, both at the time and for days after (esp.
combined with a bad hotel mattress!)  I fly at least twice a month so
I deal with this frequently.  My doc prescribes flexeril for me to
take on plane rides so that my muscles will relax -this averts a lot
of the pain, since most of it is cramp and spasm related.  I also try
to get a massage on both legs of the trip within 48 hours of the
flight.  Since I'm a cheapskate I'll usually contact a gym or a
chiropractor's office to schedule rather than a hotel spa which is
twice the money (but oh, so luxurious!)

Sorry about the sleepless nights.  I go through those too, about a
week at a time if my joints are acting up.  I try to stay as warm as
I can without breaking into a sweat.  I also have a long-lasting
sleeping pill that is supposed to carry me through the night, this
helps most nights.  (In case there are any anti-druggies on this
site, I am way past that point, I've had AS since I was 8 years
old.)  I recently bought a "bed buddy" - a cloth tube filled with
some type of grain that you heat in the microwave.  This has helped a
lot, since the heat holds for quite a while, and the slight pressure
from the weight helps too.

I haven't thought about the hot tub before - I climb into mine on
days that I can't get moving... I've never thought about the
possibility of rebound pain from it.  Does anyone else have thoughts
on this?



--- In Spondyville@yahoogroups.com, "Jim Stevely" <jstevely@...>
wrote:
>
> Thanks, Spenser that's what Physio has told me to, I used to be
involved in
> a lot of sports, and am afraid to do anything physical anymore.
Physio is
> saying that the maximum exercising I should do is swimming, walking
and the
> few stretching exercises that she gave me to do. I have even
noticed that if
> I stay in a hot tub to long or get to close to the jets that I pay
for it.
> It might feel good at the time but it's the day after up to a week
that I
> hurt big time. I am even having 2nd thoughts on flying now as when
the plane
> hit turbulence and the plane side shifts so does parts of my
spine.. it sure
> is a scary odd feeling.. Do your bones get brittle with AS and is
it easier
> to break your spine?  Am feeling a bit better at least I have been
able to
> sleep a bit and move in my sleep without waking up.. was a horrible
one last
> week.. lol
>
> JS
>
> -----Original Message-----
> From: Spondyville@yahoogroups.com
[mailto:Spondyville@yahoogroups.com]On
> Behalf Of spenser23as
> Sent: Wednesday, March 28, 2007 12:46 AM
> To: Spondyville@yahoogroups.com
> Subject: [Spondyville] Re: Jim
>
> One word of warning about exercising at gyms and fitness centers;
> Remember that the people there are most likely not at all familiar
with
> AS or what your limitations may be. DO NOT listen to them if they
tell
> you the old, "NO PAIN, NO GAIN" advice. That may be true for
> bodybuilders and people without chronic conditions, but it is not
good
> advice for us. Do not listen if they insist you go beyond what you
> know to be your strength limits or beyond the range of motion in
your
> joints. They will think they are being encouraging and supportive,
> when, they could be doing you real damage or triggering a flareup.
> Stay within yourself, and don't overdo. Use light weights, rather
than
> heavy and work for reps rather than poundage. Remember, your main
goal
> is to work on your posture, flexibility and range of motion. For a
lot
> of people, bulking up with heavier weights often works against
> maintaining flexibility and range of motion.
>
> Just something to think about.
>
> Spenser23as
>
>
>
> [Non-text portions of this message have been removed]
>

Thanks, Spenser that’s what Physio has told me to, I used to be involved in
a lot of sports, and am afraid to do anything physical anymore. Physio is
saying that the maximum exercising I should do is swimming, walking and the
few stretching exercises that she gave me to do. I have even noticed that if
I stay in a hot tub to long or get to close to the jets that I pay for it.
It might feel good at the time but it’s the day after up to a week that I
hurt big time. I am even having 2nd thoughts on flying now as when the plane
hit turbulence and the plane side shifts so does parts of my spine.. it sure
is a scary odd feeling.. Do your bones get brittle with AS and is it easier
to break your spine?  Am feeling a bit better at least I have been able to
sleep a bit and move in my sleep without waking up.. was a horrible one last
week.. lol

JS

-----Original Message-----
From: Spondyville@yahoogroups.com [mailto:Spondyville@yahoogroups.com]On
Behalf Of spenser23as
Sent: Wednesday, March 28, 2007 12:46 AM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] Re: Jim

One word of warning about exercising at gyms and fitness centers;
Remember that the people there are most likely not at all familiar with
AS or what your limitations may be. DO NOT listen to them if they tell
you the old, "NO PAIN, NO GAIN" advice. That may be true for
bodybuilders and people without chronic conditions, but it is not good
advice for us. Do not listen if they insist you go beyond what you
know to be your strength limits or beyond the range of motion in your
joints. They will think they are being encouraging and supportive,
when, they could be doing you real damage or triggering a flareup.
Stay within yourself, and don't overdo. Use light weights, rather than
heavy and work for reps rather than poundage. Remember, your main goal
is to work on your posture, flexibility and range of motion. For a lot
of people, bulking up with heavier weights often works against
maintaining flexibility and range of motion.

Just something to think about.

Spenser23as



[Non-text portions of this message have been removed]

Hi Stacy,
N
OOPS,  I really did mean a 12 step program (red face).  I have no idea if
there is anything available in your area. I attended GROW which is an
Australian program for depression and mental illness.

Maggie

-------Original Message-------

From: stacy wexler
Date: 29/03/2007 6:24:19 PM
To: for_jake
Subject: [Spondyville] Re: you won't believe this one...unfortunately, I
believe it

Maggie
Is CBT cognitive behavioral therpay? I still am not sure I understand it. I
have him an appt with both a therapist and a pyschiatrist but am noe
thinking the pyschiatrist is a bad idea and does not come until after the
Rhemy so I think this will work out. What is a 10 step program as I have
attended a 12 step one..and which one is appropriate for illness/pain?
Thanks stacy

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

Hi Stacy,

CBT is cognitive behavioural training. It helps to take the focus away from
self.

Maggie

-------Original Message-------

From: stacy wexler
Date: 29/03/2007 6:38:42 PM
To: for_jake
Subject: [Spondyville] Re: you won't believe this one

Maggie:

I also don't want him put on meds What is CBT?

As always, thanks so much

Stacy

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

-------Original Message-------

From: Kathryn
Date: 29/03/2007 10:10:40 PM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] Re: you won't believe this one
Hi Kathryn,

The benefits of knitting and crochet, as well as any craft is that sense of
accomplishment when the project is completed. I have been knitting since I
was around 5 years old. My sister taught me to knit before I went to school.
I have been crocheting since the age of 16. In fact I went on to learn to
tat and do bobbin lace. I have also managed to do a few projects in counted
cross stitch.

I find that I can sit for around 1 hour and then I must move - hence I walk
around the pool at home for exercise, and continue to knit. One of the
really good benefits happens to be that my focus is being taken away from
eating and that gives me a better chance to lose weight. I can boast of a 7
kg weight loss since I took out the knitting needles in November.

Also, much to my husband's amusement, I knitted in the car during our trip
to Melbourne. I managed to finish 1 bootie per 300 kilometres. My husband is
the one who was telling people this "statistic". The bootie was complete to
the stage of being sewn up and the crochet cord was also made.

I have just branched into making some beanies. They take less time to
complete but there are more stitches on the needle. Either way, I believe
that I can sell these items.

Maggie




Maggie,

Good points.

And now I will completely derail the conversation by going off on a
tangent because you mentioned...knitting!

I've been doing it for a few years now and it's definitely one of the
things that makes life bearable (in addition to chocolate and my
husband...98% of the time). I haven't yet felt confident enough to
try something like booties or socks. Mostly I've done scarves and
lately I learned how to do hats. I just have to remember to be good
and not sit there for too long without stretching.

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[Non-text portions of this message have been removed]

Maggie,

Good points.

And now I will completely derail the conversation by going off on a
tangent because you mentioned...knitting!

I've been doing it for a few years now and it's definitely one of the
things that makes life bearable (in addition to chocolate and my
husband...98% of the time).  I haven't yet felt confident enough to
try something like booties or socks.  Mostly I've done scarves and
lately I learned how to do hats.  I just have to remember to be good
and not sit there for too long without stretching.


-K


--- In Spondyville@yahoogroups.com, "Maggie" <maohearn@...> wrote:
>
> Hi Kathryn,
>
> My issue is not what therapists can offer to individuals. My issue
concerns
> only psychologists who see patients and offer them drugs but
nothing else.
> That is why I mentioned the benefits of CBT. In the past I saw a
> psychologist and his wife was a psychotherapist, but I did not see
her in
> the professional sense. Dealing with pain is something that is very
> difficult in no uncertain terms but we can deal with our pain best
when we
> learn to recognize the cause of the pain and then relax. There is
plenty of
> scope for relaxation therapy and yes even hypnotherapy when we are
in
> constant pain.
>
> I do know that there is a difference between psychologists,
psychotherapists
>  psychologists and counselors in general. There are some forms of
counseling
> that are more trouble than they are worth, and I remain suspicious
of any
> form of counseling that ends up with the patient suddenly
remembering things
> that never in fact happened. I am also suspicious of the counseling
> technique called Theophostic Prayer, which to my mind has a number
of hidden
> dangers (due to the lack of proper training of those who claim to be
> Theophostic prayer counselors - I did some research into this
because I came
> across someone who was using this form of counseling and I was not
at all
> impressed over what she revealed, as well as what I learned from the
> Internet.
>
> I still think that Jake would benefit from CBT because this has the
benefit
> of training the patient to use techniques that can change one's
outlook and
> lift the person out of depression. Since Jake is so young, it would
be a
> terrible thing if he ended up in the hands of a psychologist who
was nothing
> more than a pill pusher. That is the reason that I phrased my
comments
> regarding CBT, but without mentioning some of the other techniques
that can
> help all of us to deal with pain.
>
> I found that after I had my fall and fractured my coccyx again, I
started to
> slide into depression. The mere fact that I recognized what was
happening
> meant that I had true control over the situation, and was able to
turn
> things around. I did this in at least two ways. First of all, I
dragged out
> my knitting books and began knitting and crocheting booties. There
are many
> benefits from this action and the major benefit is that sense of
> accomplishment when each pair is completed. The bonus has been the
fact that
> I have managed to sell some of the booties that I have made.
Another benefit
> of this exercise has been attention to my own cognitive
difficulties. I have
> a good memory but lately it has been very poor. Concentrating on
these
> patterns has been an excellent training tool for my brain. Another
side
> benefit has been the fact that I can only sit for a short period of
time,
> and so I get up and walk around the pool at home. As a result I have
> increased the number of daily steps, plus I have been putting in
some
> aerobic activity, and I feel good as a result of what I have
achieved since
> November. Then there is the fact that I have managed to make light
of my
> pain and stiffness, by laughing at myself. Instead of concentrating
on "pain
> , I refer to the "ouch factor".
>
> In the past I have also attended a 10 step program, and I can see
the
> weaknesses of this form of support group, as well as the benefits.
One of
> the benefits was learning to be objective, rather than subjective.
Learning
> to be objective helps to take focus away from self, and this is
important
> for those who suffer from chronic pain. Less focus on the pain is
the name
> of the game.
>
> Maggie
>
> -------Original Message-------
>
> From: Kathryn
> Date: 03/26/07 00:41:36
> To: Spondyville@yahoogroups.com
> Subject: [Spondyville] Re: you won't believe this one
>
> I agree counseling can be helpful (I couldn't be a counselor-in-
> training and NOT believe that!), but it's not a one-size-fits-all
> approach. Many of us are helped just by having each other to listen
> to us. To say that only CBT will help would be similar to saying
> that only NSAIDS work on Spondylitis or that only Enbrel works.
>
> -K
>
> --- In Spondyville@yahoogroups.com, "Maggie" <maohearn@> wrote:
> >
> > Hi Stacy,
> >
> > Here are my thoughts on the issue of needing counseling. Yes, I
> think that
> > Jake will benefit from going to a therapist, but only a
> psychotherapist who
> > will give him cognitive behavioural training. The CBT will help
> with the
> > depression, but I doubt that at his age that he needs to be
placed
> on
> > anti-depressants. It could be a wrong move to take those drugs.
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

In a message dated 3/28/2007 10:40:05 PM Eastern Standard Time,
no_reply@yahoogroups.com writes:

The  Yahoo Groups team blog says: "We're aware of the duplicate message
bug  that has been affecting groups today and are working to resolve the
issue





Yahoo Freecycle groups is experiencing the problem FULL FORCE!!!  I  had 96
pieces of mail this moring from them~!  There were origionally only  about 5 or
6 post and they just kept repeating and sending thru the  night!!!



************************************** See what's free at http://www.aol.com.


[Non-text portions of this message have been removed]

Karen

Thanks for keeping it simple. That is helpful
Stacy

[Non-text portions of this message have been removed]

Maggie:

I also don't want him put on meds What is CBT?

As always, thanks so much

Stacy

[Non-text portions of this message have been removed]

Group...SORRY it took so long to respond, you know life....

[Non-text portions of this message have been removed]

Maggie
Is CBT cognitive behavioral therpay?  I still am not sure I understand it.  I
have him an appt with both a therapist and a pyschiatrist but am noe thinking
the pyschiatrist is a bad idea and does not come until after the Rhemy so I
think this will work out.  What is a 10 step program as I have attended a 12
step one..and which one is appropriate for illness/pain?
Thanks stacy

[Non-text portions of this message have been removed]

Maria...you help me, I'll help you actually potty training was easy...Jake came
home from pre-scholl one day and said "mommy I a big boy now, I wear underwear"
and he did, that was that...he's always been a smart one ( I know it's a bit off
subject)

[Non-text portions of this message have been removed]

Thanks Karen...we are going to see ANOTHER rhemy in Delray Beach next week who
doesn't take our insurance but, is recco by the arthritis foundation.  He sees
children for FREE so I imagine he has a big heart.  My mother says I should just
take the answer I have gotten and roll with it but, it just doesn't sound right
in my heart.
Thanks
Stacy

[Non-text portions of this message have been removed]

The Yahoo Groups team blog says: "We're aware of the duplicate message
bug that has been affecting groups today and are working to resolve the
issue (a side effect of this bug is that some messages are also being
delayed). We have actually pushed two fixes already, but we are aware
that some groups are still experiencing the problem and that more needs
to be done to fully resolve the issue ... Thank you and our apologies
for any inconvenience caused by the duplicate messages."

Sorry about that, Folks.  It's a temporary Yahoo thing.


Spenser23as

Anyone else notice that the digest numbers are skipping numbers now?
No longer are coming in sequential order.  Not that I mind but, it
makes me wondering if I'm missing some of the posts.