I do not go to a Rheumy on a regular basis and so I rely on my GP. He is a
very good and experienced doctor and yes he knows AS. He is the one who
draws the blood for my blood tests. My latest tests proved that I do not
have the HLAB27 gene. They also showed that my RF has gone up to 66.



Dryness is not necessarily a part of menopause, but it does happen around
that time, especially in the one area that matters for women in
relationships ;-). However, as our estrogen levels change there are changes
that take place that do have an effect upon such matters and if there is
pain or other symptoms then these need attention. I would not leave a blood
test that should be measuring the hormonal levels to a rheumatologist. I
think that I would go to a doctor who is an expert in that particular area.



Maggie



   _____

From: Spondyville@yahoogroups.com [mailto:Spondyville@yahoogroups.com] On
Behalf Of deb
Sent: Saturday, 1 July 2006 11:17 AM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] hot flashes



I saw my Rhemy Dr and she told me my hot flashes were because of
hormones. I am 48. She had never heard of "being hot while your back
fused". In fact she thought I was a little bit crazy even thinking
such a thing. Now I am NOT saying this cannot be true. I have been to
enough Drs. to know that not all of them think the same way. I did
feel she was "rushing" me a bit and was not to concerned about my NOT
SLEEPING!!! I am to continue all of my meds and next time she will do
a hormone blood test. The lab guy was absent yesterday. I am just
passing on this info. I have no idea what is right. I had a partial
hysterectomy at 39 and I really don't think I am having hormone
problems. I still feel myself ovulate and have no other symptoms,
dryness etc. One thing I would like info on is.. How do you all
relate to your friends and family about this condition (AS). I feel
like my extended family and friends just think I am a hypochrondriac
(sp?) I have tried to explain but they don't understand and just tell
me I am on to much medicine!!! I have had fibromyalgia and chronic
pain due to back and knees for about 9 years. Any ideas would be
greatly
appreciated!!





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

I am 29 yrs old,,and my grilfriend has me convinced that I am a
hypochondriac.....Well, Yes I may be at times,,,but I suffer from so
much DIFFERENT kinds of little pains from AS, that its hard to
diagnose,,,Especially when I get chest pain. This disease has caused
me to have severe anxiety issues about my health. It happens almost
everyday. But then I take my low dose of xanax medication for
anxiety and from there, I root out my problems,,,,because having
these different symptoms works me up, and then leads into ANXIETY.
Xanax calms me down,,,they say I get to worrying and worrying.
I have to see a counsler and a psychologist for my mental issues.
Everytime I go there they always say I am getting better,,but I
don't think I am getting anywhere. The problem is, I have read too
many medical books in the past, and I know too much. But, it makes
me feel bad when something really is wrong with me and nobody
listens to me..If it wasn't for me telling this doctor when I walked
into the door to ER that I was having chest pains, (they told me to
take IBPROPHEN and not see me), then I said "no" something is wrong,
and turned out to be a collapsed lung. But if it wasn't for me
taking the matter in my own hands,,then I probably had a chance of
dying right then and there...SO if you get as bad as me,,,you may
have to start taking your own advice and try your best to root out
what is going on.....And if you feel its serious enough,,,GET
MEDICAL ATTENTION,,,If you feel you are a worry wart,,then maybe
consider calming down first and then see what happens....

I agree with you 100%.  I got so much of the "I just think you WANT to be sick"
accusations I thought I was going to scream.  One thing I have found that helps
that after time, they see I am still trying.  I am in those invisible stages
still, but getting less so with each passing year  - I have to rely on a cane on
my bad days now because of my hip.  But, I keep moving and keep going, just at
my own pace.  I would rather go slow and steady, instead of always racing to
keep up with others and having to stop or give up.  I think that my loved have
seen that I am not dong anything to get attention or purposely slow anyone down.
It just takes time to get them to see and for you to prove to some that this
isn't an act.  My motto is - I keep putting one foot in front of the other. 
Nothing else matters.
   Rebecca

spenser23as <no_reply@yahoogroups.com> wrote:
           I agree with Tyler. It's easy sometimes for friends and family to make
judgements about things they don't know or understand. Deb, I think
we've all been in that situation at some point; our friends and family
don't realize what we're going through and think we're either faking
it, being lazy or are on too many meds. It's difficult, especially in
the early stages of this disease, when the problems can be "invisible",
or should I say, less noticeable. Add to that the fact that a lot of
people are so wrapped up in themselves that they barely notice what is
going on with anyone else, and you have a situation where someone is
unaware you can't turn your head at all. Meanwhile, we're thinking, how
can anyone not notice? LOL

What to do? Be patient. Explain it to them in detail. And keep
explaining ... They will zone out at first, but eventually, they will
begin to see that this is not just a temporary situation; that this is
not going to go away, and they better learn what is going on if they
want to continue to be a part of your life. Of course, it also helps if
you make an effort to do something you know you can't do, and fail
miserably right in front of them. (Guilt can be a powerful tool. LOL)
But that's next week's lesson ...

Spenser23as






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

"Spenser",

I found quite a few web sites for CES. I must say there is a close fit,
but I'm not a doc either! I am starting to see a nurse pract.  here on
St. John, who has been in the VI for over 20 yrs. FYI, she accepts
medicare! I discussed this with her, and she looked it up in one of her
ref. books (having never heard of it.) She ref. me bk to the
neurologist, feeling justified in doing so due to the lack of bladder
contractions as per the urological studies. Sparing you the descriptive
details, I will tell you that she is attempting to manage the pelvic
floor issues in a realistic way.

Thanks for the CES data...

Susan [/:)]


--- In Spondyville@yahoogroups.com, spenser23as <no_reply@...> wrote:
>
> Susan, here's a thought from left field; you might ask your doctor
> about cauda equina syndrome. It can be triggered by inflammatory
> diseases like AS. Symptoms of Cauda Equina syndrome include:
>
> Low back pain
>
> Unilateral or bilateral sciatica
>
> Saddle and perineal hypoesthesia or anesthesia
>
> Bowel and bladder disturbances
>
> Lower extremity motor weakness and sensory deficits
>
> Reduced or absent lower extremity reflexes
>
>
> Just a thought. Of course, I'm not a doctor, so that is merely
> speculation on my part.
>
>
> Spenser23as
>




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

I agree with Tyler.  It's easy sometimes for friends and family to make
judgements about things they don't know or understand.  Deb, I think
we've all been in that situation at some point; our friends and family
don't realize what we're going through and think we're either faking
it, being lazy or are on too many meds.  It's difficult, especially in
the early stages of this disease, when the problems can be "invisible",
or should I say, less noticeable. Add to that the fact that a lot of
people are so wrapped up in themselves that they barely notice what is
going on with anyone else, and you have a situation where someone is
unaware you can't turn your head at all. Meanwhile, we're thinking, how
can anyone not notice? LOL

What to do? Be patient. Explain it to them in detail. And keep
explaining ... They will zone out at first, but eventually, they will
begin to see that this is not just a temporary situation; that this is
not going to go away, and they better learn what is going on if they
want to continue to be a part of your life. Of course, it also helps if
you make an effort to do something you know you can't do, and fail
miserably right in front of them. (Guilt can be a powerful tool. LOL)
But that's next week's lesson ...



Spenser23as

>>I feel like my extended  family and friends just think I am a hypochondriac. 
I have tried to explain but they don't understand and just tell me I am on to
much medicine!!!<<

It is so easy for others to make judgment calls upon which they know nothing at
all...

Tyler

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

I saw my Rhemy Dr and she told me my hot flashes were because of
hormones. I am 48. She had never heard of "being hot while your back
fused". In fact she thought I was a little bit crazy even thinking
such a thing. Now I am NOT saying this cannot be true. I have been to
enough Drs. to know that not all of them think the same way. I did
feel she was "rushing" me a bit and was not to concerned about my NOT
SLEEPING!!! I am to continue all of my meds and next time she will do
a hormone  blood test. The lab guy was absent yesterday. I am just
passing on this info. I have no idea what is right. I had a partial
hysterectomy at 39 and I really don't think I am having hormone
problems. I still feel myself ovulate and have no other symptoms,
dryness etc.  One thing I would like info on is.. How do you all
relate to your friends and family about this condition (AS).  I feel
like my extended  family and friends just think I am a hypochrondriac
(sp?)  I have tried to explain but they don't understand and just tell
me I am on to much medicine!!! I have had fibromyalgia and chronic
pain due to back and knees for about 9 years. Any ideas would be
greatly
appreciated!!

crystal,
i have to agree with you on the disclaimer!!  hehe!!
i had to read that one to my hubby!!  too funny!!
great job spense!!!
christi

--- "C. Moore" <tiregoddess2@...> wrote:

> I have to tell you that looks terrific!!  I'm very
> impressed.  Love the carnival music, too. Reminds me
> of the yearly carnival that came to my hometown when
> I was growing up. AHHHHHHHHHHH, thanks for the
> memories!!
>
>   Can't wait for the chance to wac a doc, too!!
> BTW, love the disclaimer, Spenser. LOL
>
>   Crystal
>
> spenser23as <no_reply@yahoogroups.com> wrote:
>   Ok, it's not quite ready for unveiling, but, as a
> little tease, here is
> the first draft of the intro page to the new
> Whack-a-Doc game. I am
> still working on the text, so bear with me.
>
> Here is a link to the Spondyville main page:
> http://spondyville.com/Page14.html
>
> When you get to the Spondyville Main page, scroll
> down to the sign for
> the Old Fairgrounds, and click on it.
>
>
> Enjoy.
>
>
> Spenser23as
>
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>
>
>
>
> ---------------------------------
> Want to be your own boss? Learn how on  Yahoo! Small
> Business.
>
> [Non-text portions of this message have been
> removed]
>
>


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

Michael,



Women have the additional problem of having sweats because of the changes in
their hormonal levels due to menopause. This is what has been happening to
me. Yes, I do get the sweats from time to time and I am on medication to
control the sweats that are due to menopause.



However, this conversation has given me pause for thought because I really
do need to document when I get the sweats, especially in winter ;-).



I am fortunate because I do not have the HLAB27 gene even though I am a
Spondy. I suspect that I belong to an RA category which has been eliminated
since they discovered the HLAB27 gene was associated with AS. Perhaps the
"experts" need to reassess their own research because I have an Rheumatoid
Factor of 66. I am also heading down the path of Sjogren's Syndrome and yes
I have the dry eyes and I get a dry mouth. I use drops for my eyes when they
feel gritty. I try to keep my mouth moist so that I do not have the dryness
in the mouth - I get that symptom overnight. I have dry nasal mucous as well
and yes that can hurt, and so I use a nasal spray to help the situation. The
other area is also getting specific attention.



Maggie



   _____

From: Spondyville@yahoogroups.com [mailto:Spondyville@yahoogroups.com] On
Behalf Of spenser23as
Sent: Sunday, 25 June 2006 2:58 PM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] Re: sulfasalazine (azulifidine)



Good points Tyler. I would add one more possible reason to the
excessive sweating; are you having any fusing going on in your back?
The fusing process can give off heat, which the body tries to cool down
by sweating. Of course, the auto-immune aspect of the disease means
our body's thermostat can also get out of whack and over-compensate.
Just another possibility to throw into the mix.

Spenser23as





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

My thighs have not been so bad this year but last year I had a lot of
trouble walking and sitting, as well as getting up and down the stairs. I
still need help to get up if I am on an extremely hard surface ;-).



I had the fluid from the bursitis drained on Thursday evening and that has
brought a measure of relief to my body. I found it hard to plonk my elbow
down anywhere and could not rest comfortably overnight whilst the bursitis
was so active.



Maggie



   _____

From: Spondyville@yahoogroups.com [mailto:Spondyville@yahoogroups.com] On
Behalf Of onefineseamstres@...
Sent: Friday, 30 June 2006 10:36 PM
To: Spondyville@yahoogroups.com
Subject: Re: [Spondyville] A few questions about recent posts...




In a message dated 6/30/2006 6:28:53 AM Eastern Standard Time,
maohearn@bigpond. <mailto:maohearn%40bigpond.net.au> net.au writes:

The rheumatic diseases seem to love humidity. By this I mean that there is a
tendency to get worse during periods of high humidity. Yes, even in winter
there are times when the humidity is high, and that is when we tend to ache
and even go into flare.

Oh yes... and humidity has been very high here in the east, with all the
rain/flooding. Over all I am doing better now than I ever have, which is
amazing, because I do not have health insurance any longer and haven't been
able to
get any prescription meds. I've mostly relied on ALL DAY ALEVE (taking
2 every 6 hrs)
I've been fortunate that usually just a "rainy day" didn't bother me to
long, BUT this last deludge or rain, humidity, dampness lasted too long and
my
body didn't hold out. My low back/butt/hips ached alot, but my poor ol hand
has really hurt. My right wrist twist inward, the left hand finally started
to twist some, but more slowly about a yr ago.
I keep a razor edge on my scissors, which helps, I can still sew, and use
the scissors, just a bit more slowly at times. I never stop. I figure if I
do,
I'm in real trouble. lol I have stopped doing much work on leather. Every
winter we get people wanting new buttons sewn on leather jackets...etc...
and that always used to get tossed to me. I'm refusing now... it's too rough

on the hands...


betty

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





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

This Week at the Spondy Cafe: Banana Pancakes!!

Join a splendiferous spasm of 'specially sporty Spondys for a
supportive chat EVERY Saturday morning at 10AM Eastern Daylight Time
(7AM PDT) in the TEMPORARY Spondy Cafe annex! (Look out for that
cyber-scaffolding!) The annex is NOT here on the YahooGroups
Spondyville Home Base, but in the Yahoo Messenger conference room
area ... (When you sign onto Yahoo Messenger, find me, then Instant
Message me; My screen name
on Yahoo is: Spenser23as , I will then invite you to the conference
room chat area.

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 Spondy Cafe Temporary Chat Annex ... hmmm, well now,
let's see ... please note that you can NO LONGER just click on the
Chat button on the left side of the Spondyville Yahoo Home Base page.
Again, simply find ME on Yahoo, (Spenser23as) and I will have set up
a Spondy Cafe conference chat room using the new Yahoo Messenger
feature. I will then send you an invitation to join the room.

I hope to see YOU there.

Spenser23as

I have to tell you that looks terrific!!  I'm very impressed.  Love the carnival
music, too. Reminds me of the yearly carnival that came to my hometown when I
was growing up. AHHHHHHHHHHH, thanks for the memories!!

   Can't wait for the chance to wac a doc, too!!  BTW, love the disclaimer,
Spenser. LOL

   Crystal

spenser23as <no_reply@yahoogroups.com> wrote:
   Ok, it's not quite ready for unveiling, but, as a little tease, here is
the first draft of the intro page to the new Whack-a-Doc game. I am
still working on the text, so bear with me.

Here is a link to the Spondyville main page:
http://spondyville.com/Page14.html

When you get to the Spondyville Main page, scroll down to the sign for
the Old Fairgrounds, and click on it.


Enjoy.


Spenser23as








Yahoo! Groups Links










---------------------------------
Want to be your own boss? Learn how on  Yahoo! Small Business.

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

In a message dated 6/29/2006 11:49:37 PM Eastern Standard Time,
no_reply@yahoogroups.com writes:

When  you get to the Spondyville Main page, scroll down to the sign for
the Old  Fairgrounds, and click on  it.

Enjoy.

Spenser23as




Spenser  !!  It's so funny!  As usual, you've  out done yourself...I can't
wait to play!


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

In a message dated 6/30/2006 6:28:53 AM Eastern Standard Time,
maohearn@... writes:

The  rheumatic diseases seem to love humidity. By this I mean that there is  a
tendency to get worse during periods of high humidity. Yes, even in  winter
there are times when the humidity is high, and that is when we tend  to ache
and even go into flare.



Oh yes... and humidity has been very high here in the east,  with all the
rain/flooding.  Over all I am doing better now than I ever  have, which is
amazing, because I do not have health insurance any longer and  haven't been
able to
get any prescription meds.  I've mostly relied  on  ALL DAY ALEVE   (taking
2 every 6 hrs)
I've been fortunate that usually just a "rainy day" didn't  bother me to
long, BUT this last deludge or rain, humidity, dampness lasted too  long and my
body didn't hold out.    My low back/butt/hips   ached alot, but my poor ol hand
has really hurt.  My right wrist twist  inward, the left hand finally started
to twist some, but more slowly about a yr  ago.
I keep a razor edge on my scissors, which helps, I can still  sew, and use
the scissors, just a bit more slowly at times.  I never stop.  I figure if I do,
I'm in real trouble.  lol   I have stopped  doing much work on leather. Every
winter we get people wanting new buttons sewn  on leather jackets...etc...
and that always used to get tossed to me.  I'm  refusing now... it's too rough
on the hands...


betty


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

I have pelvic floor problems. Shall we say that I have to be careful about
coughing and sneezing ;-)



You can get help with this problem and you need to do a lot of work with the
pelvic floor exercises in order to strengthen the whole area. I do know
since I have been shown the right way to do these exercises I have had
certain benefits. I continue to have some leakage problems but it is getting
better.



I think Michael might be right about the Cauda Equina syndrome. I do not
have that condition, but I have experienced some of the symptoms that you
have described. I do know that Neurontin is very beneficial for the nerve
problems associated with AS. I have been on Neurontin for a few years and
when I do not take it I do get worse. Not everyone can tolerate Neurontin,
just like they cannot tolerate some of the NSAIDs.



If you are having trouble with GERD then Nexium 40 works very well. I have
some problems and I use the Nexium occasionally. Yes, I have had the chest
difficulties and it is shocking when things get stuck. A short course on
Nexium might help you.



The rheumatic diseases seem to love humidity. By this I mean that there is a
tendency to get worse during periods of high humidity. Yes, even in winter
there are times when the humidity is high, and that is when we tend to ache
and even go into flare.



My latest flare started two weeks ago. I did too much walking around the
local shopping centre looking for a hairdresser who could do my hair on the
spot (yes, I know it was being pushy). By the time I found a hairdresser I
was foot weary. However, my feet did not improve whilst I was in the salon.
We were going out that night and I had also shopped to ensure that I had
some nice things and to cater for the cold (we are in winter conditions). By
the time I got home my feet were very sore. We drove into Sydney, and I
ended up sneaking off to have a look at the Paddy's Market that was very
close to the Novatel where we stayed overnight. My feet continued to hurt.
Then we started off to the casino where we were going to the Lyric Theatre
to enjoy "Swan Lake on Ice". The seating in this theatre is terrible. I made
sure I did not get numb "bum" syndrome by getting up at the intermission.
Even though we were sitting down my feet continued to hurt. We also had
dinner at a restaurant in the casino . This was a group activity and it was
paid for by my husband's company. The next morning my feet were hurting and
then as I was walking, first it was the right leg, and then it was the left
leg that gave way. My feet were at the point where I could barely walk at
all. In fact I needed a walking stick if I was going to end up going a
distance. Two weeks later and I am still experiencing pain in my left heel.



Whilst all of this is happening, I managed to cause injury to the ligaments
in my right calf muscle, so I guess that takes care of the fact that I have
most pain on the left side of my body, and especially in my left heel. I am
at the point where I just want to sleep.



Maggie







   _____

From: Spondyville@yahoogroups.com [mailto:Spondyville@yahoogroups.com] On
Behalf Of Susan
Sent: Tuesday, 27 June 2006 1:06 PM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] A few questions about recent posts...



I have not had access to my Rhuematologist for over two years due to
living in the USVI. I hope to see him by the end of August. When I
moved here three years ago I started having what I thought were"hot
flashes" related to menopause. There is no doubt that I am
experiencing it. Now I find out (from this group) that when fusing is
taking place folks have night sweats. Plus, this is the first time I
have read about fusing as a distinct process. I have never read this
in any of the AS information I come across, nor heard it any where
else. There are no OB-GYN's in the USVI who accept medicare now, so I
have not seen one in a number of years... My primary care physician
here had quite a bit of blood work done (not a sed' rate, etc) and
said every thing was normal.It was the usual panels. I asked the
Physical therapist I was seeing here if he knew any thing about how
menopause impacted arthritic activity. My arthritis is getting much,
much worse. He had not ever been exposed to this type of information.
Any way, I had to quit going to PT because I could not pay the the co-
payments. Now about the esaphaegous(SP!) difficulty. I started having
problems on and off about five years ago. In the last two years it
has gotten much, much worse! I never know when it will happen but the
pain is the worst I have ever experienced except during child birth.
It has happened twice when I was eating out. I have to jump right up
and run to the bathroom and bring the food back up. It is stuck and
will simply not go further and I am in agony. My GP here arranged for
a barium x-ray which I knew would lead to nothing, because I have
never had liquid trigger the spasm, and there was not much chance it
would happen on "q". You mentioned the term stricture here, so I
looked it up. I was not familiar with it. Within the last year my
toes, parts of my legs, some times my arms and hands get numb fairly
often. My toes do every single night. There is some times associated
pain. It got so bad last fall that I went to the ER. Note; I have had
arthritis since I was a little girl, so living with it is not new to
me. I'm not even going to go in to every thing about my spine here! I
will wait until the next email. Any way, I was sent to a neurologist
here. He did a couple of blood tests for fairly rare muscular
diseases, then tested my neurological responses which were perfectly
normal, then gave up. I don't have to tell any one in this group
about how specialists often do not see the forest for the trees!
Okay, now I have a pelvic floor prolapse situation which is getting
worse and worse, and started to a urologist. He canceled my scheduled
surgery (which I REALLY needed!) because testing revealed that my
bladder literally does not contract. As we were discussing the very
unappealing options when I asked him why my bladder has stopped
contracting. FYI, there are no meds to cause it to do so. He doesn't
know, mentions a few possible reasons which he does not feel apply to
me, and says it can't be neurological according to the neurological
studies I had done. I started thinking about this and did my own
research. A B12 deficiency could cause it. I give myself B12
injections twice per week for this very condition. I am seeing some
one else on Wed. to talk with her about this. Certain ingredients in
medications can cause it. I went to see my pharmacist and found that
none of my meds have these ingredients. However, problems with the
SACRAL NERVE can cause it! I figure this could apply to me. I don't
know what can be done, but this pelvic prolapse situation is more of
an imminent difficult for me now, than my AS is. I would like to hear
more about associated AS sympthoms which are not typically in the
literature. People in this group seem to know about such things. I
have had injections in my hips in the past which helped a great deal.
I read here that some of you have had them in your spinal area(s) and
that helped you. Any way, spinal questions for next time...I was
diagnosed with AS about 10 years ago.





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

Ok, it's not quite ready for unveiling, but, as a little tease, here is
the first draft of the intro page to the new Whack-a-Doc game.  I am
still working on the text, so bear with me.

Here is a link to the Spondyville main page:
http://spondyville.com/Page14.html

When you get to the Spondyville Main page, scroll down to the sign for
the Old Fairgrounds, and click on it.


Enjoy.


Spenser23as

Wow. Truly amazing.  It's enough to make you ... oh, wait, we already
ARE sick ...

When your blood pressure returns to normal, write a very calm and
detailed letter to this company's president.


Spenser23as

Well, my refill request is still being "processed".  They keep
trying to run it through with the old insurance ID number instead of
the number my COBRA coverage is under.  The order is in their system
with a request to correct the number and they'll "get to it" in 24-
72 hours (or so they say).  I kept trying to explain that I've been
working on this for weeks and I need the refill by Monday and no one
would give me a straight answer about whether that would be possible
or not.  Finally, I got someone on the phone who admitted that
they'd messed up the order so badly that there was no way I could
have the refill by Monday, but I could get an override from the
insurance company so that I could pick up a month's worth from a
local pharmacy.  They couldn't have told me this yesterday?  And as
soon as I told my husband he was so mad, they'd told him to do the
same thing when we originally transferred the prescription to the
mail order system and they kept "losing" the information and he
forgot that getting an override was an option.

I called my local pharmacy and in a matter of minutes (somewhere
between 5 and 10, I kid you not!) they tried to run the order
through their system with the wrong number, had it denied, called me
back to get the correct number, ran it through again with the
correct number, got it approved, and called me back to tell me I
could come pick it up any time.  Why couldn't the mail order company
do it that quickly?  Because according to the nice person today who
told me about the override they're "5000 units" behind.

I could have let my husband pick it up on his way home, but after
all this mess I wasn't taking any chances.  I went out and picked it
up myself as soon as they called and said it was ready.  So, I've
got a month's worth of Enbrel in my fridge, which ought to give the
mail order company enough time to finish "processing" my order.  I'm
guessing they didn't want to tell me about getting an override
because it lost them some money.  I hope that guy doesn't end up
getting in trouble.

I'm glad this is all over, but I wish there was someone at that
company I could talk to who actually has the power to make changes
so this doesn't have to happen to anyone else.

-K

Maggie, you sound very intelligent and wise. I, for one, appreciate your input
on this subject.

Personally, I just turned 53, but have been on HRT since forced menopause due to
a TAH/BSO when I was 34. My PCP asked me if I would consider discontinuing the
HRT; I said no.

When it comes right down to it, it's all a matter of personal choice.

Tyler

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

Well Kathryn, I can certainly sympathize with your plight.
I've never had to go through it personally (thank goodness) but I've been
witness to it on more than one occasion, and have been the one helping others
out when similar situations occur.

I guess the only "joke" I can think of is that I'm a health care professional,
and work for an insurance company! It may not sound very funny, but if you knew
me, you could certainly see the irony in it.

Personally, I believe the whole CYA thing is getting to be ridiculous, as I have
a PCP (not for long) who is so concerned with covering her hind end that it
takes an act of congress to get her to take any action on anything.

I'm in the middle of a long term disability claim that I need her assistance
with, but I have an idea that she will drag her feet so long, I will never get
the appeal completed.

The ideas you came up with are very sound. The thing I would stress is to stay
on top of it every minute. NEVER count on things to go flawlessly, or rely on
someone else to get it right.

Sad, but true.

Tyler

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

Yes Tyler, spunk is one of her middle names, along with stubborn and
opinionated. LOL

I sent her the current issue of Spondylitis Plus, so she could read an
article about the emotional impact of chronic disease, for which, a
writer from the SAA had interviewed me. Now she wants to call them and
give them a piece of her mind, because she didn't think they wrote
enough about me, and she thinks they are too west coast oriented. LOL

Spenser23as

no, no, thank you!!  hehehehe!!
christi

--- Kathryn <kathryn17@...> wrote:

> Thank you, Christi.  I really needed to hear that
> today :)
>
> -K
> --- In Spondyville@yahoogroups.com, christina price
> <cjjames3@...>
> wrote:
> >
> > kathryn,
> > i feel the same way, but i don't think that i
> really
> > knew how to express it the way that you just did.
> you
> > have a great outlook on life, you rebel!!!
> reading
> > all of the posts here really helps me with my self
> > esteem.  i've been pretty down in the dumps
> lately,
> > and reading what you just wrote gives me strength.
> > thank you!!
> >
> > christi
>
>
>
>
>


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

Michael, God bless your mother! Having met both her and your sister, I can vouch
for your Mom's spunk; she's amazing.

Tyler

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

The sad thing is, I'm sure there's going to be at least 1 other
person who's had the same or similar problem.

My husband switched jobs about a month ago and we thought we'd been
so careful and done everything right so that there wouldn't be an
interruption in my insurance coverage.  Unfortunately it didn't work
out that way.  His old company didn't drop him from their coverage
until a week after he'd left, so that delayed COBRA paperwork
getting sent to us.  I ordered a refill of Enbrel online 2 weeks
ago, but they won't fill it because I have no coverage.  I've spent
all morning going back and forth between the pharmacy and the COBRA
people (and it's all the same company).  The pharmacy deleted my
order without telling me because they figured I should already know
I had no coverage.  I asked what that had to do with anything and
wasn't that what I'd given them a credit card number for?  It all
came down to CYA.  They didn't want to be blamed if they filled the
prescription and charged it to my card and I couldn't get
reimbursed.  The COBRA people say I'm "in the computer", but the
pharmacy says I'm not...again, all the same company.  Now I'm giving
them an hour and a half to "update the system" at which point I
should be "in the computer" and able to get my refill.  *sigh*

The only thing I can think of that I should have done differently is
gone ahead and ordered the refill on the last day my husband worked
at the old job, even if it was too early.  At least it would have
been worth a shot.  I hate that this is happening because it's only
going to make my husband even more paranoid about ever changing jobs
again, which is really unfair.  He's supposed to be my life partner,
not "the guy who works so Kathryn can have insurance."  I wish we
could both move around, employment-wise, without insurance stuff
getting in the way or being a major consideration.  I suppose this
is the same kind of thing parents go through, always having to make
sure the kids are covered (making me the "kid" in this scenario,
lol).

My only advice to someone dealing with an employment change or
spouse's employment change would be "get refills of everything".
That and "don't take their word for it when they say something will
be done at a certain time, call and make sure it's been done".  It
may be too late to help me, but does anyone else have advice for
dealing with this kind of stuff?  Would there have been any way to
get the COBRA paperwork sooner without them waiting to send it until
2 weeks after the last coverage date?  Anyone at least have any
insurance company jokes?

-K

Thank you, Christi.  I really needed to hear that today :)

-K
--- In Spondyville@yahoogroups.com, christina price <cjjames3@...>
wrote:
>
> kathryn,
> i feel the same way, but i don't think that i really
> knew how to express it the way that you just did.  you
> have a great outlook on life, you rebel!!!  reading
> all of the posts here really helps me with my self
> esteem.  i've been pretty down in the dumps lately,
> and reading what you just wrote gives me strength.
> thank you!!
>
> christi

Michael



Thanks for the insight. Likewise it made me smile. The HRT will not stop
arthritis but will assist in preventing the worst of all things
osteoporosis.



I go to daily Mass and no I do not fall asleep (I will leave that to the
parish priest). I am very active in giving the Eucharist to the oldies at
the Sunday Mass but I cannot cope with going up and down the stairs to
attend to the choir. We have a solution in place to cope with this situation
and I am training another to take over with the oldies. I am a lector and I
can cope if the readings are not very long even when I am in flare. It is
more difficult when the plantar fasciitis is active (like today and this
week). I have an arrangement with my partner that he will read when I am not
well enough to take on the role on the Sunday and then I will do the
commentary, and where necessary if I read he will take over with the second
reading.



Maggie



   _____

From: Spondyville@yahoogroups.com [mailto:Spondyville@yahoogroups.com] On
Behalf Of spenser23as
Sent: Thursday, 29 June 2006 3:43 AM
To: Spondyville@yahoogroups.com
Subject: [Spondyville] Re: One for the ladies of a certain age...



Okay, I know this is not an area from which I can speak from
experience, but Maggie's post made me smile. My mother and sister are
polar opposites when it comes to the issue of HRT. My mom, who will be
88 in August, has been on HRT for something like 30 years at least.
She swears by it, and claims that it's the reason she never got "old-
age" arthritis. Although she's had a few minor health problems in the
last year or two, she's still in remarkably good shape for her age,
still sharp as a tack, and looks much younger than her age. My sister,
who will be 60 next year, adamantly refuses HRT, and vows never to do
it. She has been having some arthritis, and at one point was diagnosed
with a spondylaorapathy, but has denied the diagnosis and is just
taking Alleve as needed and has become a semi-vegetarian. (She eats
meat on rare occasions.) My mother meanwhile, lives in a retirement
building run by nuns, and goes to mass frequently. (According to my
mother, when she a child, a nun told her that if you fall asleep while
saying the rosary, it still counts. That being true, my mother must
hold the record for nap-assisted rosaries. But I digress...)

Spenser23as





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

I had the best results with the Remifemin in the perimenopausal stage. It
took care of some of the problems that I had with PMS. The Livial is on
prescription and costs around $40 per month. It is working fine and I do not
have much in the way of hot flushes.



The changes are due to the dropping in the level of estrogen in our bodies
and that is why we get these various symptoms. The anger is an indication of
too much of the hormone testosterone. That is also treatable.



Until I was under so much stress recently my anger had dissipated quite
considerably. The anger was not a part of my symptoms. I believe that the
anger is treatable by learning to recognize the signs and then stopping to
analyze the incident that caused the feeling of anger. We can do a lot more
for ourselves than we recognize and we need to be aware that these things
can be changed by the switching of our thoughts and simply asking "what is
the worst thing that can happen?"



The symptoms in the fingers can also be a part of perimenopause, and yes I
had a rheumy tell me that the pain in my fingers will disappear after I have
been through menopause. Well, the problems in my fingers have not
disappeared. ;-). I do not think that the arthritis in my little finger is
capable of disappearing in that way ;-)



What I have noticed is an increase in the number of flares since menopause
as well as a change in my inflammation indicators. There have been changes
in my RF and it has gone from 39 to 66. My ANA has increased from 1:80 to
1:160. The five year change is 1:40 to 1:160. There had been an increase in
my cholesterol levels which had been totally under control until now.



Maggie



   _____

From: Spondyville@yahoogroups.com [mailto:Spondyville@yahoogroups.com] On
Behalf Of onefineseamstres@...
Sent: Wednesday, 28 June 2006 8:52 PM
To: Spondyville@yahoogroups.com
Subject: Re: [Spondyville] Re: One for the ladies of a certain age...




In a message dated 6/28/2006 5:21:44 A.M. Eastern Standard Time,
maohearn@bigpond. <mailto:maohearn%40bigpond.net.au> net.au writes:

Remifemin

I tried this and it did absolutely nothing for me. I also bought several
"quite expensive" remedies from a local health food store... which did
nothing... WELL I TAKE THAT BACK... One such remedy had some type of
"ancient
Chinese herbs" which made me itch to the point I could have clawed myself
half to
death.
I do however, think that I had unusually severe symptoms. (so did my
grandmother, but not my mom) I would have severe hot flashes that lasted and

lasted... like 45 min later my face is still not red...but a deep almost
purple
and while I was "stuck" in the hot flash...my blood pressure would sore.
Soon
as the flash was over... the bp dropped back to normal. Problems was I was
having hot flashed that lasted longer than just a few min on and off all day

long. As many as 10 or 12 per day...just during my work hours... It was
horrible...
and I didn't just feel moody or stressed... I felt more of a "rage" I
discovered I had an anger that could come up and I felt like half killing
some
body... Not really an unjustified thing... I'd just always handled it fine
before... but with all those hot flashes my patience left me quickly.
My rage/anger wasn't unprovoked, the recipient was quite deserving..(LOL)
it's just that in the past... I never reached that level... I was quite good

at handling the stresses of life...

I did finally go on the lowest dose of HRT. for about 2 yrs just to get thru

the worst of it. I took them at age 48 until about 50. I have not had them
in 5 yrs now and am doing fine! ;o)
I still occasionally have a mild hot flash, but not bad. I only had those
sweats at night once that was real bad... and then it was during a highly
stressful time anyway... (death in the family)



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





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

Okay, I know this is not an area from which I can speak from
experience, but Maggie's post made me smile.  My mother and sister are
polar opposites when it comes to the issue of HRT.  My mom, who will be
88 in August, has been on HRT for something like 30 years at least.
She swears by it, and claims that it's the reason she never got "old-
age" arthritis.  Although she's had a few minor health problems in the
last year or two, she's still in remarkably good shape for her age,
still sharp as a tack, and looks much younger than her age.  My sister,
who will be 60 next year, adamantly refuses HRT, and vows never to do
it.  She has been having some arthritis, and at one point was diagnosed
with a spondylaorapathy, but has denied the diagnosis and is just
taking Alleve as needed and has become a semi-vegetarian. (She eats
meat on rare occasions.)  My mother meanwhile, lives in a retirement
building run by nuns, and goes to mass frequently.  (According to my
mother, when she a child, a nun told her that if you fall asleep while
saying the rosary, it still counts. That being true, my mother must
hold the record for nap-assisted rosaries. But I digress...)


Spenser23as

In a message dated 6/28/2006 5:21:01 A.M. Eastern Standard Time,
maohearn@... writes:

I have  a dryness problem (LOL)


LOL   I had that too...Have that too.  But, now that I'm old  and dried
up...(LOL)  I guess I'm lucky that my husband also has hormone  problems.. He no
longer produces testosterone and was given  the patches to  wear, but he won't
wear them. He says they make him itch and he don't want  to have to think about
"THAT" all the time...LOL  I'm thinking of changing  his name to "Al Bundy"
LOL


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

In a message dated 6/28/2006 5:21:44 A.M. Eastern Standard Time,
maohearn@... writes:

Remifemin


I tried this and it did absolutely nothing for me.  I also bought  several
"quite expensive" remedies from a local health food store... which  did
nothing... WELL I TAKE THAT BACK... One such remedy had some type of  "ancient
Chinese herbs" which made me itch to the point I could have clawed  myself half
to
death.
I do however, think that I had unusually severe symptoms. (so did my
grandmother, but not my mom)   I would have severe hot flashes that  lasted and
lasted... like 45 min later my face is still not red...but a deep  almost purple
and while I was "stuck" in the hot flash...my blood pressure would  sore.  Soon
as the flash was over... the bp dropped back to normal.   Problems was I was
having hot flashed that lasted longer than just a few min on  and off all day
long. As many as 10 or 12 per day...just during my work hours...  It was
horrible...
and I didn't just feel  moody or stressed... I felt more of a  "rage"  I
discovered I had an anger that could come up and I felt  like  half killing some
body... Not  really an unjustified thing...  I'd just always handled it fine
before... but with all those hot flashes my  patience left me quickly.
My rage/anger wasn't unprovoked, the recipient was quite  deserving..(LOL)
it's just that in the past... I never reached that  level... I was quite good
at handling the stresses of life...

I did finally go on the lowest dose of HRT. for about 2 yrs just to get  thru
the worst of it.  I took them at age 48 until about 50. I have not had  them
in 5 yrs now and am doing fine! ;o)
I still occasionally have a mild hot flash, but not bad.  I only had  those
sweats  at night once that was real bad... and then it was during  a  highly
stressful time anyway... (death in the family)




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