I'm sorry to say I've never met Rick But I wanted to say I hope he gets well
soon and I will keep him and his family in my prayers during this tough time! I
feel like all of us here that suffer from this nasty disease have to keep up our
faith and know that we can beat this one way or another even if its learning to
cope with what is dealt to us! We have all had to learn to be stronger some how
to be able to get threw all the illnesses that comes with having this disease!



I know this had made me stronger along with all the other life’s lessons I have
dealt with I have to be stronger now so I can function for my children!



HAVE A WONDERFULAND PAIN FREE DAY AND I WILL KEEP ALL OF YOU GUYS IN MY PRAYERS!


spedmus <no_reply@yahoogroups.com> wrote:
So sorry- Rick, my friend.  For those of you who don't know Rick you
are missing a treat and I hope Deanna gets that MAc computer in his
view so he can see how much we all miss him at chat.  I missed
Saturday because I was watching a movie that I really like and
haven't seen it in many years and I was thinking- but if I see this
I'll miss talking to Rick and now I see I would have missed him any
way. Get well soon- so you can be back on the recombinant bike as
soon as it thaws, but let's see we are talking Wisconsin here so
maybe you won't have to heal TOO fast- snow till June, right?  Be
very careful cause we love you here in Spondyville.  Betty said too
bad we aren't a real town- but you know , I think that we are.





---------------------------------
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Spondyville-unsubscribe@yahoogroups.com

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Do you Yahoo!?
  Yahoo! Search presents - Jib Jab's 'Second Term'

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

So sorry- Rick, my friend.  For those of you who don't know Rick you
are missing a treat and I hope Deanna gets that MAc computer in his
view so he can see how much we all miss him at chat.  I missed
Saturday because I was watching a movie that I really like and
haven't seen it in many years and I was thinking- but if I see this
I'll miss talking to Rick and now I see I would have missed him any
way. Get well soon- so you can be back on the recombinant bike as
soon as it thaws, but let's see we are talking Wisconsin here so
maybe you won't have to heal TOO fast- snow till June, right?  Be
very careful cause we love you here in Spondyville.  Betty said too
bad we aren't a real town- but you know , I think that we are.

I am so sorry to hear about Rick.  Praying for a fast and amazing  recovery.
It's awful to be down like that. I know it must be a painful and most
difficult time. Wish we all really lived in the "same" little town..then some of
us
would be able to stop by  and help a bit... sneak you in a juicy burger,
fries or something..

betty


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

Scary / sad news.  Prayers for a speedy recovery!!


Cyn

spenser23as <no_reply@yahoogroups.com> wrote:


Hi. I wanted to let everyone know ... I got an email from Deanna on
Saturday, regarding her husband, a longtime Spondyville resident and
frequent contributer to the Spondy Cafe chat room, Rick (screen name:
RDay)from Wausau, WI. Rick fell late Wednesday night and broke a
vertebrae in his upper back. He has to wear one of those halo braces
that they screw into your head. Saturday they got him up and walking
a few steps and Deanna says he is doing a little better. Because the
screws are considered open wounds, he won't be able to take his
Enbrel until the halo is removed, which could be about 3 months. I'm
sure all the residents of Spondyville join me in wishing Rick all the
best for a speedy recovery. Our thoughts and prayers are with you,
my friend!! Deanna promises to keep me posted on his progress and I
will naturally pass the information on to all the residents of
Spondyville.

Spenser23as







Yahoo! Groups Links










Have a chocolate filled day,

Cyn





---------------------------------
Post your free ad now! Yahoo! Canada Personals


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

Spenser,

I am very sorry to hear about Rick. Please convey my best wishes to him and
Deanna for his speedy recovery.  I hope that you will keep us posted on his
condition.

Crystal

spenser23as <no_reply@yahoogroups.com> wrote:

Hi. I wanted to let everyone know ... I got an email from Deanna on
Saturday, regarding her husband, a longtime Spondyville resident and
frequent contributer to the Spondy Cafe chat room, Rick (screen name:
RDay)from Wausau, WI.   Rick fell late Wednesday night and broke a
vertebrae in his upper back.  He has to wear one of those halo braces
that they screw into your head.  Saturday they got him up and walking
a few steps and Deanna says he is doing a little better.  Because the
screws are considered open wounds, he won't be able to take his
Enbrel until the halo is removed, which could be about 3 months.  I'm
sure all the residents of Spondyville join me in wishing Rick all the
best for a speedy recovery.  Our thoughts and prayers are with you,
my friend!!  Deanna promises to keep me posted on his progress and I
will naturally pass the information on to all the residents of
Spondyville.

Spenser23as





---------------------------------
Yahoo! Groups Links

    To visit your group on the web, go to:
http://groups.yahoo.com/group/Spondyville/

    To unsubscribe from this group, send an email to:
Spondyville-unsubscribe@yahoogroups.com

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---------------------------------
Do you Yahoo!?
  Yahoo! Search presents - Jib Jab's 'Second Term'

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

Maria-

Thanks for posting the article. I will ask my doctor about this.
I'm not sure if it will be the same situation as the DMARDs because
they both affect the TNF, but it's worth looking into.  At this
point, anything is better than pain.  Thanks again.

Kristina

-- In Spondyville@yahoogroups.com, Maria H Schulz <snooksmama@j...>
wrote:
> As a nurse, I have seen several patients on Thalidomide. There are
> several children on the juvenile arthritis list I am on who have
> benefitted from treatment. Since Kristina is unable to take some
of the
> anti-TNF's due to her MS, I thought it might be worth looking into.
> I don't know if you have to be in a clinical trial or not...
> Maria
>
> On Sat, 29 Jan 2005 04:08:34 -0000 spenser23as
<no_reply@yahoogroups.com>
> writes:
>
> The rheumy I was seeing about six or seven years ago, mentioned
the
> possibility of trying Thalidomide to me, I suspect after reading
an
> article such as this one.  What he found when he looked into it
> further, however, was that in the U.S., (At the time), Thalidomide
> was not easily obtained, and required a special exemption from the
> CDC or something of the sort.  Turned out to be a lot easier to
look
> towards other, more easily obtainable DMARDS and Anti-TNF drugs.
Of
> course, a lot could have changed in 6 years, but that was my
> experience then ...
>
> Spenser23as
>
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
> To visit your group on the web, go to:
> http://groups.yahoo.com/group/Spondyville/
>
> To unsubscribe from this group, send an email to:
> Spondyville-unsubscribe@yahoogroups.com
>
> Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
> [Non-text portions of this message have been removed]

I was wondering why he wasn't at the chat this past Sunday.  Heal Fast Rick.
Marvin
----- Original Message -----
From: "spenser23as" <no_reply@yahoogroups.com>
To: <Spondyville@yahoogroups.com>
Sent: Sunday, January 30, 2005 8:52 PM
Subject: [Spondyville] News about RDay


>
>
> Hi. I wanted to let everyone know ... I got an email from Deanna on
> Saturday, regarding her husband, a longtime Spondyville resident and
> frequent contributer to the Spondy Cafe chat room, Rick (screen name:
> RDay)from Wausau, WI.   Rick fell late Wednesday night and broke a
> vertebrae in his upper back.  He has to wear one of those halo braces
> that they screw into your head.  Saturday they got him up and walking
> a few steps and Deanna says he is doing a little better.  Because the
> screws are considered open wounds, he won't be able to take his
> Enbrel until the halo is removed, which could be about 3 months.  I'm
> sure all the residents of Spondyville join me in wishing Rick all the
> best for a speedy recovery.  Our thoughts and prayers are with you,
> my friend!!  Deanna promises to keep me posted on his progress and I
> will naturally pass the information on to all the residents of
> Spondyville.
>
> Spenser23as
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>
>
>
> --
> No virus found in this incoming message.
> Checked by AVG Anti-Virus.
> Version: 7.0.300 / Virus Database: 265.8.2 - Release Date: 1/28/2005
>
>



--
No virus found in this outgoing message.
Checked by AVG Anti-Virus.
Version: 7.0.300 / Virus Database: 265.8.2 - Release Date: 1/28/2005

Oh MY RICK!!!!!!


Geeze .........hope you take it easy so you can mend and heal!!!

PLease be careful!

hugs

Flower

Although I am new here and don't know him, please pass on my best wishes to Rick
and Deanna. They will be in my thoughts, as I'm sure they will be with many.

Colleen

--
"Not trying is a greater failure
than not succeeding."






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

Michael~

This is shocking and sad news. I've sent a email to Rick; hopefully Deanna is
able to pick up his email while he is out of commission.

Thank you so much for letting us know. I'll keep both Rick and Deanna in my
thoughts and prayers.

Tyler

-------------- Original message --------------

Hi. I wanted to let everyone know ... I got an email from Deanna on
Saturday, regarding her husband, a longtime Spondyville resident and
frequent contributer to the Spondy Cafe chat room, Rick (screen name:
RDay)from Wausau, WI.   Rick fell late Wednesday night and broke a
vertebrae in his upper back.  He has to wear one of those halo braces
that they screw into your head.  Saturday they got him up and walking
a few steps and Deanna says he is doing a little better.  Because the
screws are considered open wounds, he won't be able to take his
Enbrel until the halo is removed, which could be about 3 months.  I'm
sure all the residents of Spondyville join me in wishing Rick all the
best for a speedy recovery.  Our thoughts and prayers are with you,
my friend!!  Deanna promises to keep me posted on his progress and I
will naturally pass the information on to all the residents of
Spondyville.

Spenser23as






Yahoo! Groups Links

To visit your group on the web, go to:
http://groups.yahoo.com/group/Spondyville/

To unsubscribe from this group, send an email to:
Spondyville-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

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

Hi. I wanted to let everyone know ... I got an email from Deanna on
Saturday, regarding her husband, a longtime Spondyville resident and
frequent contributer to the Spondy Cafe chat room, Rick (screen name:
RDay)from Wausau, WI.   Rick fell late Wednesday night and broke a
vertebrae in his upper back.  He has to wear one of those halo braces
that they screw into your head.  Saturday they got him up and walking
a few steps and Deanna says he is doing a little better.  Because the
screws are considered open wounds, he won't be able to take his
Enbrel until the halo is removed, which could be about 3 months.  I'm
sure all the residents of Spondyville join me in wishing Rick all the
best for a speedy recovery.  Our thoughts and prayers are with you,
my friend!!  Deanna promises to keep me posted on his progress and I
will naturally pass the information on to all the residents of
Spondyville.

Spenser23as

Rick
Your wife is right! The treatment of AS is advancing very well right
now. There are new drugs on the market that seem to be working
en-mass. A
Rheumatologist, or Internalist, is the Dr that most likly is up on all
of the new treatments.

Send me an e-mail and I'll cut~n~paste the CA list from the SAA for
you. Also check out the SAA website.

http://www.spondylitis.org/main.aspx



On Sun, 30 Jan 2005 07:57:39 -0000, imslotgod <imslotgod@...> wrote:
>
> I've had AS for years and HATE doctors. My wife (a nurse) is pushing
> me to see a specialist. Does anyone around Loma Linda/Riverside Ca
> know of a doctor who treats AS? I've been taking Indomethacin for 5
> years and my wife says there are better meds out there. Any
> suggestions?
> Rick
> Hemet Ca
>
>
>
>
> ________________________________
> Yahoo! Groups Links
> To visit your group on the web, go to:
> http://groups.yahoo.com/group/Spondyville/
>
> To unsubscribe from this group, send an email to:
> Spondyville-unsubscribe@yahoogroups.com
>
> Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


--
Kenneth M. Delano
Albert Lea, MN

Thank you Spencer.  I had to able my java and now I can chat.  Patty helped me
figure it out.  Scott

spenser23as <no_reply@yahoogroups.com> wrote:
Sorry Scott.  I can imagine how frustrating this must be... I will
add you to my Yahoo buddy list and you can add my screen name to
yours (on Yahoo I am Spenser23as)  The next time you see me online,
contact me and we will get to the bottom of this. I hope.   :-)

Spenser23as





---------------------------------
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    To visit your group on the web, go to:
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---------------------------------
Do you Yahoo!?
  Yahoo! Search presents - Jib Jab's 'Second Term'

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

Thank You Patty!  Java!  Now I can get into the Spondyville chat room!  Many
Thanks!  Scott

Patty <lea0068@...> wrote:Hey find out if he is running a Java Script
thats the problem I was having and once I Downloaded jave I have nad no
problems! I still have the install file for it if you think that could be the
problem! I could e-mail it out to him if need be... Let me know! I was just
going out on a limb to help figure tit out...

~~Patty~~


spenser23as <no_reply@yahoogroups.com> wrote:

Sorry Scott.  I can imagine how frustrating this must be... I will
add you to my Yahoo buddy list and you can add my screen name to
yours (on Yahoo I am Spenser23as)  The next time you see me online,
contact me and we will get to the bottom of this. I hope.   :-)

Spenser23as





---------------------------------
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    To visit your group on the web, go to:
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__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

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



---------------------------------
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    To visit your group on the web, go to:
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---------------------------------
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  Meet the all-new My Yahoo! – Try it today!

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

I've had AS for years and HATE doctors. My wife (a nurse) is pushing
me to see a specialist. Does anyone around Loma Linda/Riverside Ca
know of a doctor who treats AS? I've been taking Indomethacin for 5
years and my wife says there are better meds out there. Any
suggestions?
Rick
Hemet Ca

a 10' x 10' house for $199,000.?  Well, obviously, you are not used
to dealing with the NYC real estate market. (LOL)

$199,000. might seem like a lot in CA, where the temperature is
always the same, but here in NYC, you not only get several changes of
seasons for your money (sometimes within the same week), but for a
measly $300,000. you can get a smaller, more cozy (ok, cramped),
studio apartment, not a flimsy stand alone Malibu beach house which
could be washed away at any time by mudslides.  Sure the temperature
is warm ALL the time in CA, but who wants to roast chestnuts when
it's 85 degrees?  And what good is a 10' x 10' house sinking into the
abyss when compared to a 6' x 6' studio apt with a view of Central
Park in the Springtime?

:-)

Spenser23as

(Above response was meant as a bit of comedy, not a serious reply.)

Hey find out if he is running a Java Script thats the problem I was having and
once I Downloaded jave I have nad no problems! I still have the install file for
it if you think that could be the problem! I could e-mail it out to him if need
be... Let me know! I was just going out on a limb to help figure tit out...

~~Patty~~


spenser23as <no_reply@yahoogroups.com> wrote:

Sorry Scott.  I can imagine how frustrating this must be... I will
add you to my Yahoo buddy list and you can add my screen name to
yours (on Yahoo I am Spenser23as)  The next time you see me online,
contact me and we will get to the bottom of this. I hope.   :-)

Spenser23as





---------------------------------
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    To visit your group on the web, go to:
http://groups.yahoo.com/group/Spondyville/

    To unsubscribe from this group, send an email to:
Spondyville-unsubscribe@yahoogroups.com

    Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

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

Well,  I'm here in snowy, icy, Virginia and ENJOYING the low temp.  of  only
22 degrees!
We have the old wood stove just "a going" lol.  IN FACT... last during  last
weekend's snow storm..I got busy and put a heavy pot on the wood stove and
slow cooked a beef roast.. lot's of onions, too most all evening to cook..
tossed in  potatoes, onions, carrots..etc...
WAS so so good... Slow cooked food on wood, the 'old fashioned' way is such
a treat.
Heck..I might do it again tomorrow.
I have a gas stove/oven... but why not take advantage of the wood  stove.

For the down side... I hate carrying in wood.  Because of my stupid  back, I
can only carry about 2 logs at a time, but at least it's not that far...  I
figure the exercise, (walking) is good so long as I don't get impatient and  try
to carry too many... then I'm in trouble.

I'm really having a time with my ribs hurting. I guess I started to feel
them about a yr ago... but much more this winter.  My low back is always  real
stiff. My mid-back.. just above the waist..and lower shoulder blade area...  is
one big pain... Sort of feels like my ribs on the "back side"... like maybe
about 2inches out from my back bone... is where they are so sore... Taking lots
  of Aleve.. not that great but better than nothing...

oh,,  and though it's cold and icy... I haven't felt a single  earthquake all
week!  LOL

betty


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

Hello All,
   Greetings from sunny San Diego. Just wanted to let you in the
freezer know it's a warm day here in So Cal.Nyuk-nyuk-nyuk. Just
wanted to let everyone know I'm now selling 10'x10' homes here for
the low price of 199,999.Can ya believe it! For home prices here
that's a bargain! So come on down to Shantytown and get yours today!
Oops, sorry Spencer, I broke the advertising rule!
Just had to say something besides the usual "We feel crappy". Cuz we
do. For the new-new guys and gals "hello". I'm an undifferentiated
spondy-guy with associated colitis. Wonderful way to introduce
myself eh? It's like a game show contestant on "What's Your Ailment".
"TMJ for $500 Alex."  So fellow sufferererers,..just givin a shout
because seems I was "hard bouncing" with my yahoo account and
couldn't get on to post. May you have a flexible day.
Brad

Sorry Scott.  I can imagine how frustrating this must be... I will
add you to my Yahoo buddy list and you can add my screen name to
yours (on Yahoo I am Spenser23as)  The next time you see me online,
contact me and we will get to the bottom of this. I hope.   :-)

Spenser23as

As a nurse, I have seen several patients on Thalidomide. There are
several children on the juvenile arthritis list I am on who have
benefitted from treatment. Since Kristina is unable to take some of the
anti-TNF's due to her MS, I thought it might be worth looking into.
I don't know if you have to be in a clinical trial or not...
Maria

On Sat, 29 Jan 2005 04:08:34 -0000 spenser23as <no_reply@yahoogroups.com>
writes:

The rheumy I was seeing about six or seven years ago, mentioned the
possibility of trying Thalidomide to me, I suspect after reading an
article such as this one.  What he found when he looked into it
further, however, was that in the U.S., (At the time), Thalidomide
was not easily obtained, and required a special exemption from the
CDC or something of the sort.  Turned out to be a lot easier to look
towards other, more easily obtainable DMARDS and Anti-TNF drugs.  Of
course, a lot could have changed in 6 years, but that was my
experience then ...

Spenser23as








Yahoo! Groups Links

To visit your group on the web, go to:
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To unsubscribe from this group, send an email to:
Spondyville-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

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

Hi Spenser,  I just tried to get itno the chat room and failed once more.  Have
time to help me?  Scott / osceen1900

spenser23as <no_reply@yahoogroups.com> wrote:
This Week at the Spondy Cafe: Jooky Sea Cap't. Pancakes!! (Don't
ask ...)

Join a splendiferous spasm of 'specially sporty Spondiacs for a
friendly, supportive chat EVERY Saturday morning at 10AM Eastern Time
(NYC time) in the Spondy Cafe chat room here on the Yahoo Spondyville
Home Base ...

FREE bottomless mugs of cyber-coffee or cyber-tea!

The Spondy Cafe, where the refills are on the house and NOT in your
lap ... (Unless we forget to take our meds, then extra cyber-napkins
are also available...)

To get to the Chat room just click on the Chat button on the left
side of the Spondyville Yahoo Home Base page ...

OR - If you're feeling a little more adventurous, you can follow
these simple cyber-directions:

To get to the Spondy Cafe, simply turn left at the intersection of
Inflammation Ave. and Autoimmune Blvd., then go straight for a mile
and a half, past the hollowed out tree stump, which is actually quite
close to the legendary thorny briar patch of idyllic happiness,
which, ironically, is only a few short steps above and beyond the
festering quagmire of lost hopes from which rises dramatically, the
majestic purple mountain of steely resolve under the bluest of dream-
laden skies ... Keep going till you get to the beautiful art-deco
Spondyville Bijou - Now Showing: Jim Carrey in: "Eternal Sunshine of
the Spondy Mind" ... then take a very HARD right and follow the
big gaudy billboards to the dark and scary sinkhole of outrageous
idiocy, this week featuring: The Condaleeza Rice Senate Approval
Hearings ... As always, you can shake your head in utter disbelief and
then avoid getting involved in that whole mess by using the secret
door behind the sinkhole's southwest brick wall and proceeding
directly to the Alpha Gore Memorial Information Superhighway overpass
and take the newly re-vamped Democratic Blue Highway Bypass to
America's Coastlines ... then go straight till you get to Pete the
Papparazzi's Absolutely Authentic Real Genuine photo museum, this
week featuring pics of Carnac the Magnificent being just that ...
Wait a minute!!! Those pics are REAL!! (And we will treasure them
forever) ... Then go straight for a mile and three quarters, turn
left at the second traffic light, then take the Papa Letterman
Bypass, and keep going all the way to the littered empty lot which
has been magically transformed into Spondyville.com, (It's
Spondylicious! ... but still in need of YOUR creative input! ... then
hang a right at the bronze plaque which marks the EXACT spot where
you can order your beautifully cool new Spondyville caps and mugs
(BOTH THE CAPS AND THE MUGS ARE NOW HERE!! GET YOUR ORDERS IN NOW and
BEAT THE POST-VALENTINE'S DAY PRICE INCREASE!) ... Then, keep going
until you see the friendly, blinking neon signs for the Spondylitis
Association Home Page. Then park your vehicle in the only lot where 9
out of 10 spots are marked "If you can turn your head, you CAN'T park
here!", whisper "Marie Strumpell sent me", and then take the
flagstone path that leads around the back and look for the enormous
non-toppled statue of the gracious green grocer with the fused spinal
column, and ... you've made it!!

Remember, since 1995, if it's Saturday, it's the Spondy Cafe.


Spenser23as





---------------------------------
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    To visit your group on the web, go to:
http://groups.yahoo.com/group/Spondyville/

    To unsubscribe from this group, send an email to:
Spondyville-unsubscribe@yahoogroups.com

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---------------------------------
Do you Yahoo!?
  Yahoo! Search presents - Jib Jab's 'Second Term'

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

This Week at the Spondy Cafe: Jooky Sea Cap't. Pancakes!! (Don't
ask ...)

Join a splendiferous spasm of 'specially sporty Spondiacs for a
friendly, supportive chat EVERY Saturday morning at 10AM Eastern Time
(NYC time) in the Spondy Cafe chat room here on the Yahoo Spondyville
Home Base ...

FREE bottomless mugs of cyber-coffee or cyber-tea!

The Spondy Cafe, where the refills are on the house and NOT in your
lap ... (Unless we forget to take our meds, then extra cyber-napkins
are also available...)

To get to the Chat room just click on the Chat button on the left
side of the Spondyville Yahoo Home Base page ...

OR - If you're feeling a little more adventurous, you can follow
these simple cyber-directions:

To get to the Spondy Cafe, simply turn left at the intersection of
Inflammation Ave. and Autoimmune Blvd., then go straight for a mile
and a half, past the hollowed out tree stump, which is actually quite
close to the legendary thorny briar patch of idyllic happiness,
which, ironically, is only a few short steps above and beyond the
festering quagmire of lost hopes from which rises dramatically, the
majestic purple mountain of steely resolve under the bluest of dream-
laden skies ... Keep going till you get to the beautiful art-deco
Spondyville Bijou - Now Showing: Jim Carrey in: "Eternal Sunshine of
the Spondy Mind" ... then take a very HARD right and follow the
big gaudy billboards to the dark and scary sinkhole of outrageous
idiocy, this week featuring: The Condaleeza Rice Senate Approval
Hearings ... As always, you can shake your head in utter disbelief and
then avoid getting involved in that whole mess by using the secret
door behind the sinkhole's southwest brick wall and proceeding
directly to the Alpha Gore Memorial Information Superhighway overpass
and take the newly re-vamped Democratic Blue Highway Bypass to
America's Coastlines ... then go straight till you get to Pete the
Papparazzi's Absolutely Authentic Real Genuine photo museum, this
week featuring pics of Carnac the Magnificent being just that ...
Wait a minute!!! Those pics are REAL!! (And we will treasure them
forever) ... Then go straight for a mile and three quarters, turn
left at the second traffic light, then take the Papa Letterman
Bypass, and keep going all the way to the littered empty lot which
has been magically transformed into Spondyville.com, (It's
Spondylicious! ... but still in need of YOUR creative input! ... then
hang a right at the bronze plaque which marks the EXACT spot where
you can order your beautifully cool new Spondyville caps and mugs
(BOTH THE CAPS AND THE MUGS ARE NOW HERE!! GET YOUR ORDERS IN NOW and
BEAT THE POST-VALENTINE'S DAY PRICE INCREASE!) ... Then, keep going
until you see the friendly, blinking neon signs for the Spondylitis
Association Home Page. Then park your vehicle in the only lot where 9
out of 10 spots are marked "If you can turn your head, you CAN'T park
here!", whisper "Marie Strumpell sent me", and then take the
flagstone path that leads around the back and look for the enormous
non-toppled statue of the gracious green grocer with the fused spinal
column, and ... you've made it!!

Remember, since 1995, if it's Saturday, it's the Spondy Cafe.


Spenser23as

The rheumy I was seeing about six or seven years ago, mentioned the
possibility of trying Thalidomide to me, I suspect after reading an
article such as this one.  What he found when he looked into it
further, however, was that in the U.S., (At the time), Thalidomide
was not easily obtained, and required a special exemption from the
CDC or something of the sort.  Turned out to be a lot easier to look
towards other, more easily obtainable DMARDS and Anti-TNF drugs.  Of
course, a lot could have changed in 6 years, but that was my
experience then ...

Spenser23as

Kristina;
I don't know if thalidomide has been mentioned to you, or if you could
take it because of the AS, but it might be worth mentioning to your
doctor.
Here is the article:
Maria, mom to Rob, 15


Thalidomide Helpful in Refractory Ankylosing Spondylitis

J Rheumatol 2003;30:2627-2631.
http://www.medscape.com/viewarticle/467079?mpid=23730

NEW YORK (Reuters Health) Jan 12 - Thalidomide treatment appears useful
in patients with severe ankylosing spondylitis (AS) refractory to
conventional therapy, according to researchers in China and Taiwan.
After 5 of 13 patients dropped out of the study, 4 of the 8 who
completed a course of treatment showed a greater than 50% improvement
and the other 4 showed an improvement of more than 20%.

Dr. James Cheng-Chung Wei of Chung Shan Medical University, Taichung,
Taiwan and colleagues note that therapies targeting tumor necrosis
factor (TNF) alpha have shown dramatic results in patients with
refractory AS. However, these biological modifying agents such as
infliximab "are expensive and not available in many countries."

Thalidomide also inhibits TNF alpha, and the researchers sought to
examine its effect in 13 patients with refractory AS. Three had juvenile
AS, 9 had adult AS and the remaining patient had AS with psoriasis.

Subjects were given thalidomide 100 mg per day for a week followed by
200 mg per day for a further 24 weeks.

Two patients withdrew from the study because they developed severe
rashes, one did so because of dizziness and a further 2 dropped out
because they experienced no treatment effect after 8 weeks.

There were significant improvements in measures of function and disease
activity and a significant improvement in eosinophil sedimentation rate.

Minor adverse events such as dizziness and constipation were seen in
most patients, but there were no serious adverse events. The researchers
observe that "specific TNF-alpha antagonists are not available or
affordable in most Asian countries." Thalidomide, they conclude "is a
viable alternative."

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

Hi Kristina,

My AS was caught quite early, because my dad has the same arthritis.  Pain wise
for myself, I do have days where I have little to no pain; but most of the time
I do have a fair bit of pain.  I do have stretches where the pain signicifantly
affects my ability to do fairly basic things like standing, walking, and
reaching.

I know my dad experiences greater amount of pain than I do, but it affects him
less.  I think what you consider "bad" pain depends on what you have experienced
in the past.  I know the pain I consider an average amount of pain would have
had me whining and wimpering 20 years ago.



Kristina <showxcheer@...> wrote:

Hi everyone. I was reading an article today written by a spine
surgeon on the subject of AS. For most of the article he went on to
describe the basics of AS and how it can affect people, treatments,
risk of fractures and surgery, etc. Then the article ends by
commenting on how most people with AS don't have significant amounts
of pain or disability and can go on to lead full lives. This seemed
to me to be a contradiction in terms.

I am newly diagnosed with AS but have suffered with other forms of
arthritis for several years now. It is quite possible that I've had
AS for longer than my docs realized and I live with quite a bit of
pain. I am not sure how my other arthritic conditions affect or
worsen my AS pain level so I'm curious to hear of other peoples
experience with the disease.

1. Do you experience a lot of pain with AS?
2. Anyone here ever experienced fractures from this?
3. Can anyone here who has fusing of their spine tell me what they
go through?

Thanks for the input in advance.

Kristina







Yahoo! Groups Links










Have a chocolate filled day,

Cyn





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

Craig-

Thanks for answering.  The medication issue is a very tough one.  My
doc prescribed Vioxx for me but my insurance wouldn't cover it, then
it was pulled from the market.  My doc then attempted to put me on
Bextra only to pull me off later because I have heart risk factors.
I have an ulcer so anti-inflammatories are out for me and I can't do
Enbrel, Humira or Remicade because of conflicts with my multiple
sclerosis.  So at this point, it's only Tylenol arthritis and
methotrexate.  My neck hurts all the time as does my mid/lower
back.  I have some fusion already and I suddenly can't move in one
direction.  It's startling to me how few people know of this disease
and how disabling it is.

Kristina

>
> I was asked the question of rate your pain on a scale of 1 to 10
> just yesterday.  My usual comment to that is "What time of the
day?"
> I find that most of my pain is after I have been laying in bed all
> night (hopefully flat on my back).  After I get up and move,
things
> tend to hurt less.
>   I would say that typically depending on the meds,  my pain is at
> an average of 5. After running out of Vioxx, and trying several
> others,  I would have rated my pains at a 8-9, where is 10?  I
think
> we all have our own thoughts on our pain levels.
>   As far as the fusion question goes, I don't have any at this
> point, but the muscles in my neck are doing a pretty good job of
> keeping from looking left, right, up, and down.  I can roll my
head
> and feel stuff rubbing together, so it is close.
>
> Good luck,
> Craig

---> Hi Kristina!  It's almost like a low blow to hear that, for
there are many days when taking off my own shoes is a "10" on the
scale of pain.
>
> 1.  Do you experience a lot of pain with AS?  YES.  Very much so.
The thought of leading a "Full" life is sometimes a distant dream.
>
>

Hi there.  Thanks for responding.  I felt the same way when I read
that article.  I can really relate to your "shoe issue".  I had to
change my shoes to tennis shoes with either a velcro closure or zip
closure to I could slip them on and fasten them easily about two
years ago.  Now, I can't even bend to put them on by myself, I need
my daughter to help me.  I can't move or twist my waist to the right
without being in pain.  Sometimes I think if a doctor has not walked
a mile in my shoes he really can't know anything about the
experience of the disease he treats.

Kristina

Bp-

Thanks so much for your response.  I am experiencing a loss of
mobility in my thoracolumbar spine on the right side.  I can't turn
my waist to the right or make any slight movements to that side
without being in terrible pain.  My neck is also very painful and I
am one of the lucky ones who has painful finger and ankle joints as
well.   I'm 39 and I feel 80.

Kristina


> > 3.  Can anyone here who has fusing of their spine tell me what
they
> > go through?
>
> I have fused two and my back I am very stiff, I could not feel it
> fuse, just the loss of mobility.
>
> I know is my father had AS also, and fused badly and he could not
turn
> his head at all. He could not put on his shoes and toward the end
of
> his life he needed help in the bathroom.
>
> bp

AS can come in many levels of severity.  For most ASers, the pain
levels seem to be the worst in the earlier stages of the disease.
After the fusing process is complete, the pain tends to lessen in
some ways, as the inflammation in the larger areas such as the spine
tends to ease and the AS may either go into remission or travel to
other areas of the body, such as the shoulders, knees, hips or
ankles.  However, AS manifests itself differently in everyone, so it
is difficult to state specific hard and fast rules about pain levels
or where and how the AS will present itself.

The fusing process may happen quickly, slowly, or in some cases, not
at all, depending on the level of severity.  For me, the fusing
happened fairly quickly, and was notable for the amount of heat that
was given off as a by-product of the fusing process.  Obviously, it
affected the mobility in my neck and spine, and I no longer can bend
my spine or turn my head.  But there is also no longer any acute pain
in that area, only chronic discomfort.

Spenser23as