betty,
  oooh i know what you mean about the sand!  yikes.  i was wondering where
rodanthe was!  i figured east coast somewhere.  it has an east coast name if you
know what i mean. 
  what a wonderful time you must have had with your sisters!!!  that sounds like
fun!!  my sister has a pontoon boat too.  theirs is at their river house on the
colorado river in california.  they actually live in lake havasu , but their
river house is only an hour away.  it is very hot out there, but they love
it!!!  i like it when its a bit cooler!!  i'm not a "hot" person!!  hehe!!!
   i want to see august rush, i just have to try to talk the hubby into that
one!!  i'm glad that you had such a fun time with your sisters.  i hope that you
have fun on your vacation to the outer banks too!!!!  let us know how much fun
you have there too!!!  you can do my vacationing for me! hehe!!!
  if anything happens with my hubbys job here, we may end up in south carolina,
so we may have to hook up at some point!!!  at least i would know a few of you
on the east coast!!  we could all visit each other!! hehe!!
take care!!
christi

--- On Tue, 9/30/08, onefineseamstres@... <onefineseamstres@...> wrote:

From: onefineseamstres@... <onefineseamstres@...>
Subject: Re: [Spondyville] Re: "boneafide reasons for living"
To: Spondyville@yahoogroups.com
Date: Tuesday, September 30, 2008, 7:35 PM







Hi Christi.
I spent last weekend out on the Chesapeake Bay! I live in Central Va... and
left work friday evening at 4. After the stop for fuel, and by the bank...I
was on my way to my sister's house. She's younger than me, but retired about
18 mo ago at age 55. She and her girlfriend bought a home RIGHT ON THE
BAY!!!. It was about a 4 hr drive...But worth it... I got there about 9:15 and
stayed until mid day Sunday. We watched the movie early Sat while it
rained...When it was over..so was the rain, then we were out on the boat..
Acutally
she has a large pontoon... I like that better...more walking around room...
We stayed out on the boat for hours... (yep..I got a little sunburn) lol One
of my other sister's came too... It was a
"Sister Weekend" !! I need more of them.
She has a large...tall airmattress. .. that thing is about 24" tall.... I
slept on it..and was surprised how comfy it was... Easy on the pressure
points... didn't hurt my hip at all... Just crawling up and out of it in the
morning was an ordeal...lol

We also watched another movie... "August Rush" about a little boy...(child
protogy) Wonderful movie... seemed to "drag" a bit the first 30 min... then
was very good...

I'm going on vacation in about 2 wks...down to Outer Banks for a few days...
OH..that's where Rodanthe is... (you know...the movie... Nights in
Rodanthe) Actually...Rodanthe is on Hatteras Island. I stayed there once...NEVER
AGAIN...lol Misquotes nearly ate me alive...
They were horrible down there... On the beach is ok... over where the
cottages are is quite another story...OH.. and there are no homes right on the
ocean as in the movie...they sit further back behind the dunes... The walk even
from an ocean front cottage is quite a ways... have 2 dunes to cross... too far
for me to walk in sand... Walking in sand pulls at my back too hard
betty



In a message dated 9/30/2008 9:13:42 PM Eastern Standard Time,
cjjames3@yahoo. com writes:

betty,
we just watched it the week before last!! it is a wonderful movie. i wish
that those two actors would do another film together, what work!!! i love
them both anyway, but together they were awsome!!! my hubby loved it too!!
he said that it was one of the best he'd seen in a long time. i hope that
your hubby likes it!!
christi

************ **Looking for simple solutions to your real-life financial
challenges? Check out WalletPop for the latest news and information, tips and
calculators. (http://www.walletpo p.com/?NCID= emlcntuswall0000 0001)

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















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

Hi Christi.
I spent last weekend out on the Chesapeake Bay!  I live in Central  Va... and
left work friday evening at 4. After the stop for fuel, and by the  bank...I
was on my way to my sister's house.  She's younger than me, but  retired about
18 mo ago at age 55.  She and her girlfriend bought a home  RIGHT ON THE
BAY!!!.  It was about a 4 hr drive...But worth it... I got  there about 9:15 and
stayed until mid day Sunday.  We watched the movie  early Sat while it
rained...When it was over..so was the rain, then we were out  on the boat.. 
Acutally
she has a large pontoon... I like that  better...more walking around room...
We stayed out on the boat for hours...  (yep..I got a little sunburn) lol  One
of my other sister's came too... It  was a
"Sister Weekend" !!   I need more of them.
She has a large...tall airmattress... that thing is about 24" tall.... I
slept on it..and was surprised how comfy it was...  Easy on the pressure
points... didn't hurt my hip at all...  Just crawling up and out of it in  the
morning was an ordeal...lol

We also watched another movie... "August Rush"  about a little  boy...(child
protogy)   Wonderful movie... seemed to "drag" a bit the  first 30 min... then
was very good...

I'm going on vacation in about 2 wks...down to Outer Banks for a few  days...
   OH..that's where Rodanthe is... (you know...the movie...  Nights in
Rodanthe)   Actually...Rodanthe is on Hatteras  Island.   I stayed there
once...NEVER
AGAIN...lol    Misquotes nearly ate me alive...
They were horrible down there... On the beach is ok... over where the
cottages are is quite another story...OH.. and there are no homes right on the
ocean as in the movie...they sit further back behind the dunes... The walk even
from an ocean front cottage is quite a ways... have 2 dunes to cross... too far
  for me to walk in sand... Walking in sand pulls at my back too hard
betty



In a message dated 9/30/2008 9:13:42 PM Eastern Standard Time,
cjjames3@... writes:

betty,
we just watched it the week before last!!   it is a wonderful movie.  i wish
that those two actors would do another  film together, what work!!!  i love
them both anyway, but together   they were awsome!!!  my hubby loved it too!!
he said that it was  one of the best he'd seen in a long time.  i hope that
your hubby likes  it!!
christi








**************Looking for simple solutions to your real-life financial
challenges?  Check out WalletPop for the latest news and information, tips and
calculators.      (http://www.walletpop.com/?NCID=emlcntuswall00000001)


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

Joy, I'm sorry you find yourself in such a situation. Unfortunately,
there isn't any easy answer. I'm afraid the nature of this disease can
lead to such problems.  In fact, I need to find a dentist here in NYC
that both accepts my health insurance and has experience working on
ASers. The hospital oral surgeon is a annoying way to have to go
financially, but sometimes it is the only option given our condition.
Letting it go is not advisable either, as such dental problems can
affect other areas of the body, including the heart. Have you discussed
this with your rheumy? Msybe he or she could give you some suggestions.
You might also inquire at a Dental college, not necessarily to have the
work done there, but to see if perhaps one of the instructors there has
any suggestions for you.  Sorry, I can't think of any better ideas for
you at the moment.  Good luck and please keep us updated as to your
progress.

Spenser23as

betty,
  we just watched it the week before last!!  it is a wonderful movie.  i wish
that those two actors would do another film together, what work!!!  i love them
both anyway, but together  they were awsome!!!  my hubby loved it too!!  he said
that it was one of the best he'd seen in a long time.  i hope that your hubby
likes it!!
christi

--- On Tue, 9/30/08, onefineseamstres@... <onefineseamstres@...> wrote:

From: onefineseamstres@... <onefineseamstres@...>
Subject: Re: [Spondyville] Re: "boneafide reasons for living"
To: Spondyville@yahoogroups.com
Date: Tuesday, September 30, 2008, 5:49 PM







In a message dated 9/30/2008 6:52:24 PM Eastern Standard Time,
no_reply@yahoogroup s.com writes:

but it was sort of like a bucket list you know like things to do
before you kick the bucket.

Funny you mention that.... I just saw the movie "Bucket List" this past
weekend... What a wonderful movie... I'd never heard of it..(I work alot and
therefore miss alot) I loved that movie... Such a wonderful story... Everyone
should see it!!
I'm making hubby watch that this weekend...lol

betty

************ **Looking for simple solutions to your real-life financial
challenges? Check out WalletPop for the latest news and information, tips and
calculators. (http://www.walletpo p.com/?NCID= emlcntuswall0000 0001)

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















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

yep!!   ty, that's the one!!!  i love it!!! 
christi

--- On Tue, 9/30/08, tchyder@... <tchyder@...> wrote:

From: tchyder@... <tchyder@...>
Subject: Re: [Spondyville] Re: "boneafide reasons for living"
To: Spondyville@yahoogroups.com
Date: Tuesday, September 30, 2008, 5:22 PM






Christi, does your "The Blue Day Book" have a picture of a frog on the front of
it? If it's the same one I've thinking of, it's a great pick-me-up book. I gave
a copy to one of my daughters several years ago, and she likes it a lot.

Ty :-)

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















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

Unfortunately-my dental woes are not over yet and I don't expect
them to end anytime soon-due now to financial concerns. My apologies
to those of you who also read the SAA board as I posted the
following there also.:

Does anyone else have problems finding a dentist ? I went to the
dentist for regular check-up and cleaning back in June/July. Turned
out I needed to have some work done. Root canals & crowns,filling
replacements etc. The dentist sent this in to Cigna-our dental
insurance company. They came back with an estimate of $1224.00. Ok.
I scheduled an appointment to have the first of this work done on
July 10,2008. I arrived at the appointment. My dentist started to
begin working on my teeth and right away decided that this was going
to be difficult-he would have to work upside down & backwards-
because of my cervical vertebrae being fused from AS & arthritis in
my jaw. He decided not to do any work and told me I needed to be
treated by a "hospital dentist". I asked him if he could refer me to
one and he said he only knew of one and he wasn't very good !! After
many phone calls and wracking my brain for ideas or people to
contact for a referral, I finally found a dentist who will work in
the hospital setting. Here are the problems. 1. He is more of a
cosmetic dentist. 2. He answered his cell phone several times during
my examination. 3. When making an appointment, I expected to be
treated by him-but after partially examining my mouth, he told me
that he rarely went to the hospital and passed me along to his co-
worker. From what I can tell of her background, she has only been
out of dental school for about 2 years. 4. The hospital that she
works out of is one that I have had a bad experience with and have
vowed never to go there as a patient again. 5. My out of pocket cost
for this treatment is outrageous-
$8448 + hospital costs. My dental insurance would only cover about
$1400 of this. I am not sure if my health insurance will cover the
hospital costs and/or how much would be covered. In order to
schedule an appointment I need to come up with $586.00 to schedule
the operating room at the hospital. Even on a payment plan, my
payments would be $225/month. Given the current state of our
economy, I don't feel it is wise to take on such a debt. I do have
pain from decay underneath fillings-but figure I've lived with it
this long-it'll just go on longer. I realize that taking care of my
teeth is important for overall health-but this is ridiculous. Why
should I be penalized for just having a physical disability ? Has
anyone else ever had this experience or know of an accomodating
dentist in the St. Louis, Missouri area ? Please give any
suggestions you can think of and thanks for reading this post !!

In a message dated 9/30/2008 6:52:24 PM Eastern Standard Time,
no_reply@yahoogroups.com writes:

but it  was sort of like a bucket list you know like things to do
before you kick  the bucket.



Funny you mention that.... I just saw the movie "Bucket List" this past
weekend...  What a wonderful movie... I'd never heard of it..(I work alot  and
therefore miss alot)   I loved that movie... Such a wonderful  story... Everyone
should see it!!
I'm making hubby watch that this weekend...lol

betty



**************Looking for simple solutions to your real-life financial
challenges?  Check out WalletPop for the latest news and information, tips and
calculators.      (http://www.walletpop.com/?NCID=emlcntuswall00000001)


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

Christi, does your  "The Blue Day Book" have a picture of a frog on the front of
it? If it's the same one I've thinking of, it's a great pick-me-up book. I gave
a copy to one of my daughters several years ago, and she likes it a lot.

Ty :-)

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

i have a book called " the blue day book"  and it has a lot of pick-me-ups in
it!  i love it.  too cute!   your book sounds  good too!  i may have to find
that one!
christi

--- On Tue, 9/30/08, spedmus <no_reply@yahoogroups.com> wrote:

From: spedmus <no_reply@yahoogroups.com>
Subject: [Spondyville] Re: "boneafide reasons for living"
To: Spondyville@yahoogroups.com
Date: Tuesday, September 30, 2008, 4:51 PM






Ohhhh- those are all good ones. Maybe we could all contribute a
couple. A few years ago a group of my friends made a list of as many
things that they were old- like I think I made a list of 55 and I left
it in this little notebook that I pick up every once in a while and it
always cheers me up to see it. In fact I keep it on my purse. There's
a book out too called "Twenty Wishes" sorry guys it's a chick book I
think, but it was sort of like a bucket list you know like things to do
before you kick the bucket. Let's brainstorm some more.















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

Ohhhh- those are all good ones.  Maybe we could all contribute a
couple.  A few years ago a group of my friends made a list of as many
things that they were old- like I think I made a list of 55 and I left
it in this little notebook that I pick up every once in a while and it
always cheers me up to see it.  In fact I keep it on my purse. There's
a book out too called "Twenty Wishes"  sorry guys it's a chick book I
think, but it was sort of like a bucket list you know like things to do
before you kick the bucket.  Let's brainstorm some more.

Shana Tova to all our Jewish friends, and may this coming new year be
one of good health and happiness.

Spenser23as

In a message dated 9/30/2008 10:02:45 AM Eastern Standard Time,
tchyder@... writes:

To all  my Jewish friends, may you have a happy, prosperous, peaceful new
year.

Shalom,
Tyler



And.... wishing a peaceful new year, filled with peace,  laughter, and
friends... to you my friend~

betty



**************Looking for simple solutions to your real-life financial
challenges?  Check out WalletPop for the latest news and information, tips and
calculators.      (http://www.walletpop.com/?NCID=emlcntuswall00000001)


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

ROFLOL!!! Good one, Betty. :-)

To all my Jewish friends, may you have a happy, prosperous, peaceful new year.

Shalom,
Tyler

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

In a message dated 9/30/2008 6:15:47 AM Eastern Standard Time,
cjjames3@... writes:

2.  your kids will probably need you for something sometime today,
and
deep down, that makes you feel wonderfully  important!!



******************************************************************************
**************************

GOD I HOPE IT"S NOT FOR MONEY AGAIN!!!  lol



**************Looking for simple solutions to your real-life financial
challenges?  Check out WalletPop for the latest news and information, tips and
calculators.      (http://www.walletpop.com/?NCID=emlcntuswall00000001)


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

Thanks, these are all excellent Christi, now go get some sleep. :-)

Spenser23as

well spens and laura,
   what a wonderful idea!!  here are my few suggestions.  i know some
will be obvious, but it's 4:00 a.m. and i've been up since 1:30
hehe!!  so i am slightly delerious!

1.  your spouse/partner loves you more than they can express.
2.  your kids will probably need you for something sometime today,
and
     deep down, that makes you feel wonderfully important!!
3.  your dog, cat, or goldfish look at you with those "eyes" that only
     they have!!!  (ooooh, squishy feeling)
4.  have you seen the sky today?
5.  you haven't gone on a cruise to alaska, or to europe, or on
safari
     in africa!!
6.  stiffy hasn't spent any time with you yet, and has been asking to
     come for a visit.
7.  your grandchildren need to get away from their parents.
8.  your best friend has to laugh, and you're the only one who does it
     right!!

anyway, i don't know if that's what you're looking for, but either
way it made me feel good!!  hehe!!!  i'm going to try to go and lie
back down for the 2 hours i have left!! hehe!!!
christi

hi carla,
  i have had a vit d def.  too.  i don't know if it's as severe as yours, but my
count was pretty low.  i take a multi vitamin with vit d, and another high dose
vit d on top of that, so basically i'm getting about 350% of my daily needs. 
have you had an mri of your s.i. joints?  there was an article that i read that
said that early mri's of the s.i. joints can lead to a diagnosis, because it
shows sacroiliitis (sp) around 7 - 10 years earlier than what they can find with
an x-ray.  you can always request one right?  i have a lot of the sam issues as
you do.  i haven't had iritis, and i can't sleep as much as you, although i am
tired all of the time!!!
  have you tried going to a different rheumy?  that may be a good idea.  it took
me 3 before i found someone who finally diagnosed me.  she is great!!! 
  anyway, i hope that you find some answers!!!  please take care!!!  we're here
for you!!!
christi

--- On Sun, 9/28/08, Carla Dreyer <eyes4u863@...> wrote:

From: Carla Dreyer <eyes4u863@...>
Subject: [Spondyville] I need your opinion
To: Spondyville@yahoogroups.com
Cc: Spondyville@yahoogroups.com
Date: Sunday, September 28, 2008, 1:00 AM






Hi its me Carla,
I am soooo confused. I started with a new PCP and I have him questuioning what
my real diagnosis is.
I am HLA B 27 positive. Have had 3 bouts of iritis and have joint pain in my
toes ankles heels knees hips lower back neck and shulders. My back MRI showes
some "pre bulging" disc . Nothing else. and they are higher up then where I have
pain. My SED rate is normal.But my Vitamine D leveles are very low almost non
existant. My right hip dislocates while I sleep.The weather makes it wirse and
for all the women in here my menstrual cycle makes the pain worse. My knees hurt
so much i cant take stairs except side ways step by step. Im sooooo tired even
if I sleep 14 hours. I get alot of head aches and...what more can I add.
My problem is. I have not had an xray prove I have AS its just the symptoms and
the hla b 27 and irirtis. My rheumy doesny want to treat me with the exception
of prednisone until I get thi neurological disorder taken care of and god only
knows when that will be as it was canceled in mya due to the drug being no good.
Im between a rock and a hrad place. I dont know if I even have AS or is it all
in my head??? the pain doesnt feel like it and if I take enuff prednisone it
gets better.
Im scared they wont be able to fond waht is wrong with me and all of them look
at me like I just want attentione.
I get plenty of attention where ever I ge. I am a happy pleasent person who
likes to make people laugh. i am a hard worker even thru the pain so my co
workers request me to be on their team cuz they know I will pull my weight and
work like a dog and get the best praise for our work.
What Im trying to say is ..... does any of this sound like you in the early
atages? Does anyone else have vit D DEFICENCY?
Im tired of it all and just want it over with.My life isnt worth living if all I
have is pain no one can help me with or even want to try. I hate waking up in
the AM and winter is just around the corner.
Please....any insight wouuld be helpful
Carla

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















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

Actually, Laura, I've been thinking about that exact thing for months.
I've been mulling over ideas for how to put something up on the
Spondyville website that would allow people who are feeling a little
down to reaffirm for themselves that life is worth living. I call the
idea: SPARC, the Spondyville Positive Attitude Re-establishment Center.
One of the problems going in, is that I don't want anyone to feel we
are mocking serious depression. This would just be a part of the
website where you could go to get some cheer or a reality check when
you're feeling a bit low.  One of my thoughts was a random generator
device which you could click and it would come up with a randomly
selected bonafide reason for living.  I'm trying to figure out the
proper context for presenting it.  Ideas and suggestions welcome.

Spenser23as

The rheumy said it wasn't enough to worry over. He had me do a piss
test but haven't gotten results back yet. I'm a little flustered
right now. Not at the doctor completely. He did p- me off on a tb
test. I had to change my route to get back in for results and the
doctor was a no show. So now the TB test is void even though the
nurse saw it was negative.
  Here's the latest. The doctor had no idea humira had a latex warning
on it. Both pens and syringes. I can't do humira or embrel. So who
knows what now.
  What is strange, the less I take anything the better I feel. I still
get random swells and painful joints but can work threw the pain
without out much issue. I skipped one week for an infection and felt
great. What's that all about? Makes me want to flush everything. But
it does control my UC. But I know weigh 50 lbs more than I did at the
start of this. But like always, the less I do, the more I hurt.
That's true PA. So except the day after taking the metho, I try and
walk and do as much as I can. Hurts like hell when I start but after
a few minutes it's like everything is normal. It takes me a good hour
to get going in the morning. Only thing real painful is pelvis when I
stand for long periods like waiting in line.
  Sorry for the long post. I haven't had anyone to talk to about this.
Brian

--- In Spondyville@yahoogroups.com, "vlmc1953" <vmcfarl@...> wrote:
>
> Hey Brian - how is your edema?  I have now been off methotrexate
for
> 2 weeks and humira for a month and I can certainly tell that the
> humira was working - Im stiff EVERYWHERE - knees, back, shoulders -
> and the PA that is affecting my "sausage" fingers has them very
> swollen and the joints are enlarged. I hit my hands on something
and
> IT HURTS!!! They had decreased in size/not tender at all to touch
> after the second humira injection.
>
> Sometimes, I think the swelling is better and then I wear some
> clothes that are too tight to wear and I know that the fluid
> retention has returned to some degree.  It is better than it was,
but
> something is still "not right".
>
>  I did blood work late Thursday afternoon and will call the primary
> care dr Monday to see what the results of kidney functions show.
My
> rheumy will also get a copy of the blood work... I don't see her
for
> 3 more weeks - she wanted all drugs out of my system for a month. I
> have an appt with a kidney specialist next week to see why kidney
> functions are up.
>
> Vicki
>

Hey Brian - how is your edema?  I have now been off methotrexate for
2 weeks and humira for a month and I can certainly tell that the
humira was working - Im stiff EVERYWHERE - knees, back, shoulders -
and the PA that is affecting my "sausage" fingers has them very
swollen and the joints are enlarged. I hit my hands on something and
IT HURTS!!! They had decreased in size/not tender at all to touch
after the second humira injection.

Sometimes, I think the swelling is better and then I wear some
clothes that are too tight to wear and I know that the fluid
retention has returned to some degree.  It is better than it was, but
something is still "not right".

  I did blood work late Thursday afternoon and will call the primary
care dr Monday to see what the results of kidney functions show.  My
rheumy will also get a copy of the blood work... I don't see her for
3 more weeks - she wanted all drugs out of my system for a month. I
have an appt with a kidney specialist next week to see why kidney
functions are up.

Vicki

We need a cheering up session for when anyone gets down like Carla.
Any ideas?  We've all had "rough spots and times" and we've pulled
through them some way or another.  The posts are a good way.  I also
suggest getting in touch with a good rheumatologist, after all they're
the experts.  Let's brainstorm now and come up with some spirit
lifters.

Wow, you sound like me right now. I wasn't diagnosed HLA B27, but I
have all the same issues and have been diagnosed with psoriatic
arthritis. You don't have any psoriasis anywhere do you? AS mostly
hits the spine and pelvis but PA hits all the joints. I would really
seek out a rheumatologist. They are the only ones really trained to
got threw all the possibilities of this. Brian
--- In Spondyville@yahoogroups.com, Carla Dreyer <eyes4u863@...>
wrote:
>
> Hi its me Carla,
> I am soooo confused. I started with a new PCP and I have him
questuioning what my real diagnosis is.
> I am HLA B 27 positive. Have had 3 bouts of iritis and have joint
pain in my toes ankles heels knees hips lower back neck and shulders.
My back MRI showes some "pre bulging" disc . Nothing else. and they
are higher up then where I have pain. My SED rate is normal.But my
Vitamine D leveles are very low almost non existant. My right hip
dislocates while I sleep.The weather makes it wirse and for all the
women in here my menstrual cycle makes the pain worse. My knees hurt
so much i cant take stairs except side ways step by step. Im sooooo
tired even if I sleep 14 hours. I get alot of head aches and...what
more can I add.
> My problem is. I have not had an xray prove I have AS its just the
symptoms and the hla b 27 and irirtis. My rheumy doesny want to treat
me with the exception of prednisone until I get thi neurological
disorder taken care of and god only knows when that will be as it was
canceled in mya due to the drug being no good.
> Im between a rock and a hrad place. I dont know if I even have AS
or is it all in my head??? the pain doesnt feel like it and if I take
enuff prednisone it gets better.
> Im scared they wont be able to fond waht is wrong with me and all
of them look at me like I just want attentione.
> I get plenty of attention where ever I ge. I am a happy pleasent
person who likes to make people laugh. i am a hard worker even thru
the pain so my co workers request me to be on their team cuz they
know I will pull my weight and work like a dog and get the best
praise for our work.
> What Im trying to say is ..... does any of this sound like you in
the early atages? Does anyone else have vit D DEFICENCY?
> Im tired of it all and just want it over with.My life isnt worth
living if all I have is pain no one can help me with or even want to
try. I hate waking up in the AM and winter is just around the corner.
> Please....any insight wouuld be helpful
> Carla
>
>
>
>
> [Non-text portions of this message have been removed]
>

Tyler,

Thank you so much for the suggestions. I am trying different ways to
commute to see if I can make it easier. I am planning on bringing in
pictures, etc. to bring the reminders of family and home.

I think you're right about trying to find the down time. They had me
so booked last week that I had almost no downtime - lunch was even
booked with people. The next week or so won't be much easier - 2 trips
to Chicago from Philadelphia. I'm going to lengthen the trips a little
to allow for some rest before/after meetings.

Again, I appreciate your suggestions. I really wanted to try a
position at about the same level as my last one - to see if I could do
it. I am hoping that I will build my stamina, but time will tell. (I
have 1 kid that just entered college and another to go next year). If
I can't do it, we'll figure out something else!

Take care and good luck with your decisions.

Karen

--- In Spondyville@yahoogroups.com, tchyder@... wrote:
>
> Hi Karen! Congrats on getting back to work. I hope it's what you
want. :-)
>
> Getting extra sleep is a good idea. Also maintaining some of your
old routine at home will help ease you into your new role. You might
not be able to sit down at 2 pm to watch a movie, but try to use some
time on the weekend to savor that small luxury (or another one you
enjoyed while not working). Also, take advantage of break times and
lunch at work. It's easy to work straight through breaks, particularly
when you are learning a new job, new employer and co-workers. Not
taking breaks and/or lunch will encourage fatigue and stress, so be
kind to yourself. This may sound silly, but drink lots of water and
take something to work that reminds you of home and comfort. I don't
know what kind of work you do, but keeping a little bit of home with
you will help keep you calm...even if you don't have an office or a
desk you can keep something small with you that helps ground you.
>
> I am looking at going back to work again after a five month absence
from the work force. In my prior position I was a management level
employee, which came with considerable stress. I received an offer
today from a different company...it's a non-management job with a
decent salary. I am fence sitting about it for several
reasons--staying at home affords me the opportunity to rest when my
body is not functioning well, no commute and my lifestyle now is
relatively stress free. On the other hand, I also need the cognitive
and social stimulation that my career provides...not to mention money
to live on! lol The position comes with a sign on bonus, benefits and
a small work team. I'll also have to begin a daily commute again,
which I do not look forward to because it's too hard to sit for long
periods of time.
>
> Tyler
>
> [Non-text portions of this message have been removed]
>

Great post, Tyler!


Spenser23as

Carla, I'm sorry you are feeling so crappy. First, it's NOT all in your head!!!

As for the vitamin D deficiency....it's not all that uncommon, particularly for
people who live in northern climates. I live in Seattle, and have to take
vitamin D and A in order to keep my D levels up, particularly in the dreary
winter. Unlike more sunny climates, we experience virtually no sunshine (the
major provider of vitamin D) for about 6 months out of the year. At this moment
it is foggy and very cool.

As for your PCP trying to negate your symptoms, please don't allow it. Although
many PCPs are physicians, they are not rheumatolgy specialists. Because AS and
other auto-immune diseases are a daily part of our lives, we sometimes can think
that all the professionals should know about them too...but they don't.

I know you have a lot going on, Carla, but please try not to get discouraged.
Your attitude and focus makes a big difference in how you feel. Believe me, I
know how difficult it is to stay positive when you hurt ALL THE TIME, but try to
reach in and pull out that positive attitude and patience for your condition,
and yes, even for the doctors who make you feel like a head case. Remember,
doctors are diagnosticians, not Gods; they are fallable just like us. :-)

Live strong! I know you can pull yourself out of this funk.

Tyler

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

Carla, sorry you're having such a tough time.  It is possible to have
AS and not have elevated an Sed rate. What exactly is the reason why
your new PCP is questioning your diagnosis? Is it just the lack of x-
ray evidence in the sacro area? I'm not a doctor, but it sure sounds
to me as if you have AS.  Have you been to a rheumatologist lately
that can confirm your diagnosis and write a letter to your new PCP?

Spenser23as



--- In Spondyville@yahoogroups.com, Carla Dreyer <eyes4u863@...>
wrote:
>
> Hi its me Carla,
> I am soooo confused. I started with a new PCP and I have him
questuioning what my real diagnosis is.
> I am HLA B 27 positive. Have had 3 bouts of iritis and have joint
pain in my toes ankles heels knees hips lower back neck and shulders.
My back MRI showes some "pre bulging" disc . Nothing else. and they
are higher up then where I have pain. My SED rate is normal.But my
Vitamine D leveles are very low almost non existant. My right hip
dislocates while I sleep.The weather makes it wirse and for all the
women in here my menstrual cycle makes the pain worse. My knees hurt
so much i cant take stairs except side ways step by step. Im sooooo
tired even if I sleep 14 hours. I get alot of head aches and...what
more can I add.
> My problem is. I have not had an xray prove I have AS its just the
symptoms and the hla b 27 and irirtis. My rheumy doesny want to treat
me with the exception of prednisone until I get thi neurological
disorder taken care of and god only knows when that will be as it was
canceled in mya due to the drug being no good.
> Im between a rock and a hrad place. I dont know if I even have AS
or is it all in my head??? the pain doesnt feel like it and if I take
enuff prednisone it gets better.
> Im scared they wont be able to fond waht is wrong with me and all
of them look at me like I just want attentione.
> I get plenty of attention where ever I ge. I am a happy pleasent
person who likes to make people laugh. i am a hard worker even thru
the pain so my co workers request me to be on their team cuz they
know I will pull my weight and work like a dog and get the best
praise for our work.
> What Im trying to say is ..... does any of this sound like you in
the early atages? Does anyone else have vit D DEFICENCY?
> Im tired of it all and just want it over with.My life isnt worth
living if all I have is pain no one can help me with or even want to
try. I hate waking up in the AM and winter is just around the corner.
> Please....any insight wouuld be helpful
> Carla
>
>
>
>
> [Non-text portions of this message have been removed]
>

Hi its me Carla,
I am soooo confused. I started with a new PCP and I have him questuioning what
my real diagnosis is.
I am HLA B 27 positive. Have had 3 bouts of iritis and have joint pain in my
toes ankles heels knees hips lower back neck and shulders. My back MRI showes
some "pre bulging" disc . Nothing else. and they are higher up then where I have
pain. My SED rate is normal.But my Vitamine D leveles are very low almost non
existant. My right hip dislocates while I sleep.The weather makes it wirse and
for all the women in here my menstrual cycle makes the pain worse. My knees hurt
so much i cant take stairs except side ways step by step. Im sooooo tired even
if I sleep 14 hours. I get alot of head aches and...what more can I add.
My problem is. I have not had an xray prove I have AS its just the symptoms and
the hla b 27 and irirtis. My rheumy doesny want to treat me with the exception
of prednisone until I get thi neurological disorder taken care of and god only
knows when that will be as it was canceled in mya due to the drug being no good.
Im between a rock and a hrad place. I dont know if I even have AS or is it all
in my head??? the pain doesnt feel like it and if I take enuff prednisone it
gets better.
Im scared they wont be able to fond waht is wrong with me and all of them look
at me like I just want attentione.
I get plenty of attention where ever I ge. I am a happy pleasent person who
likes to make people laugh. i am a hard worker even thru the pain so my co
workers request me to be on their team cuz they know I will pull my weight and
work like a dog and get the best praise for our work.
What Im trying to say is ..... does any of this sound like you in the early
atages? Does anyone else have vit D DEFICENCY?
Im tired of it all and just want it over with.My life isnt worth living if all I
have is pain no one can help me with or even want to try. I hate waking up in
the AM and winter is just around the corner.
Please....any insight wouuld be helpful
Carla




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

Debating what to do this weekend?

Come join your fellow Spondyvilleans for a couple of friendly,
supportive chats this (and EVERY) Saturday at 10AM Eastern Time (7AM
Pacific)AND at 5PM Eastern time (2PM Pacific)in the famous Spondy
Cafe chat room. (For United Kingdom times, add 5 hours.)

The residents of Spondyville have been meeting regularly online in
the Spondy Cafe since 1995.

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

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

The Spondy Cafe: "Where those who fuse, go to shmooze."


I hope to see YOU there.


Spenser23as

Thanks Tyler for pointing that out. I hadn't seen the post yet this
morning.  Jayne, I deleted the post with your address and phone
number.

As a reminder, please don't post personal information such as your
address and phone number on any internet message board.

Spenser23as

Good point

  Advice taken



From: Spondyville@yahoogroups.com [mailto:Spondyville@yahoogroups.com] On
Behalf Of tchyder@...
Sent: Thursday, September 25, 2008 12:18 PM
To: Spondyville@yahoogroups.com
Subject: RE: [Spondyville] Enbrel



You're welcome, Jayne. I'm glad the information may be useful. One note of
caution, however, it may be a good idea not to include your address and
phone number on emails posted to the message board.

Tyler :-)

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





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