Health Care funding..

2007-01-31 18:46:15

Hi Folks,
I have been reading lots and lots on this list about the problems people are
having maintaining, obtaining and also continuing their health insurance and
medication treatment and health care. I am not sure how or if people are
interested in discussing this but.part of what I believe is that we as a
community need to take some positive action.
Are there people here who would like to form some kind of action group to
start to have our stories told to our representatives about the trials and
tabulations of living with a long term illness and the stress, fear and
physical agony many of us go through to maintain a toehold in living our
lives. We spend so much time fighting, struggling and being out right angry
about having to use the bit of strength we have left begging for health
care.
Anyone want to have this discussion?
Thanks,
Barb

Re: [CMC-WLS] is anybody out there

2007-01-31 18:12:51

Hi...yes I have that problem, but did not have the urge to eat much until about 6 months after my surgery. I think at first I just kept telling myself if I did not stick

to the plan that the doctor gave me that I would really damage myself. Its really

important to follow your eating plan and lose the weight during the time they call the "window of opportunity". Exercising helped curb my appetite when it did get bad.

Have you attended the "Coaching Meetings" in Nashville...they really help too.

Good luck to you.

Wanda

08/16/04 Dr Olsen

Young baseball player with PA

2007-01-31 07:26:31

An uplifting report of a young man who was diagnosed with PA at age 1
(you read that right - one year old) who plays high school baseball!
http://www.chillicothegazette.com/apps/pbcs.dll/article?
AID=/20080515/SPORTS/805150329/1006
Gives me courage and reminds me I CAN cope.
Enjoy!
sherry z

is anybody out there

2007-01-31 01:38:15

I had surgery 11/28 RNY by pass Dr. Olsen was my Dr. I have had no
complications, everything is fine except my desire to eat.
ANYBODY ELSE HAD THIS PROBLEM?

Re: [CMC-WLS] Digest Number 2430

2007-01-30 22:56:16

Sheilah,

You are about to embark on the best adventure of your life. It's an exciting and scary time. Just think positive and be ready for LOTS of positive changes.

I had my procedure done on Sept. 29, 2005 at Vanderbilt. The first two weeks were the hardest. I've never regretted going through with it though. It's so wonderful for the first time in my life to step on the scale and see those numbers going in the RIGHT direction for a change.

I've lost from 381 to 314. I'm feeling 100% better. I'm starting to walk better. As a matter of fact, I actually went to the grocery store for the first time in 7 years, by myself. What a wonderful feeling that was.

As everyone says on this site...WELCOME TO THE LOOSING SIDE!

You will be in my prayers on Monday!

Betty

Just diagnosed - help and info needed please

2007-01-30 14:34:32

I was just given the diagnosis yesterday of Psoriatic Arthritis and
right now my head is spinning. I have a 2 month old and am
breastfeeding so my treatment while I am doing that is limited. I am
on a low dose Prednisone and will remain on it while I am nursing and
my rheumy wants to start me on MTX when I finish nursing. I have had
psoriasis in my scalp since I was a child, never on my skin/body. I
guess he is using that history to make his diagnosis of PA versus RA.
I had myself convinced before I walked into his office that I had RA.
I know the 2 are similar. What can you suggest for me at this point? I
just finished a prednisone taper and am getting ready to go back on a
low daily dose until I finish nursing my son which I feel at this
point is most important to me. My joints ache now but I can function
without a problem. Please let me know your thoughts. Also, have you
taken MTX? Thank you for helping a newly diagnosed person. Any
supplements or diet changes you can recommend? Books to read?
"klcxman" <klchristman2002@...

intro

2007-01-30 14:31:19

This is just to introduce myself to the group. My husband of 21 years
suffers from psoriatic arthritis which has lead to his becoming totally
disabled. I am going to try to keep this short so as not to bore
you...he had been taking Humira and my insurance had a copay of $20,
but in January, we both went on Medicare and one of the prescription
plans, actually with same insurance company...now the copay for the
drug was $400 a month, so we weren't able to afford it and he went
without that relying on Methotrexate and Vicodin to make life
bearable...his swelling of hands and feet and pain just kept
increasing. So we found out that the insurance would pay for
Remicade...as is billed as a doctors visit, so he had a treatment, one week
later got a skin infection, but didn't think it was related...got the second
treatment, and again a skin infection, this time worse than
the previous...so no more Remicade or any drugs in that category..left
with nothing but Methotrexate again..Thinking of looking into herbal,
holistic, alternative medicines/therapy for answers...does anyone have
any ideas of where we go from here....
thank you.
sharon p from NY

Re: [PsoriaticArthritis] Carpal tunnel syndrome and PA

2007-01-30 03:53:02

I have also heard that chiropractors can do wonders with carpal tunnel.
Joanna Hoelscher

Clinical Trials

2007-01-29 21:10:48

I noticed on the NIH Website (National Institutes of Health, US Government),
they have clinical trials for psoriatic arthritis sufferers. Not all testing
centers are based in the USA, some are in Canada and Europe. Some trials are
recruiting volunteers, while other trials are already completed. I have not yet
figured out how to access information on completed trials, as that that could be
of interest. (Please let me know if you were able to find the results of their
completed trials.) Some of these tests seem to be testing for genetic factors,
while others are trying out new drugs. I accessed the information by entering
the word Psoriatic in the search box on this webpage.
http://clinicaltrials.gov/ct2/search The homepage for the CDC is
http://www.NIH.gov
However, for some reason I am having trouble 'getting in' the Search Box on this
page. Elisa
Womyn Wear <womynwear@...

Re: [CMC-WLS] LAP BAND SURGERY

2007-01-29 16:44:21

I agree. I was extremely pleased with Dr. Dyer when he did my RNY.
nuluk <jhoneys@...

I WANT TO THANK DR. DYER FOR A GREAT JOB WITH MY LAP BAND PROCEDURE. IT
WAS PAINLESS AND MY HEALING PROCESS WAS VERY FAST. HE DID A VERY GOOD
JOB OF EXPLAINING THE PROCESS TO ME AND MY FAMILY.

Carpal tunnel syndrome and PA

2007-01-29 10:47:03

An article in this month's Arthritis Today magazine advises that CTS
related to RA or other inflammatory arthritis such as PA is better
treated with a steroid injection and NOT surgery! The injection often
relieves the swelling in the wrist that affects the nerve, making
surgery unnecessary.
just FYI,
sherry z

Re: [CMC-WLS] new to group

2007-01-29 05:48:33

April,
Dr. Houston is my doctor. He didn't require me to
lose any weight prior to surgery or no special diets.
I think depending on how much one weighs and how
difficult the surgery may be for that specific person
depends on having to lose weight prior to surgery. No
bowel prep before surgery (mangnesium citrate), only
clear liquids 2 days before. I did begin to take my
Flinstone vitamins a few weeks before surgery to help
get everything at a good level, but he didn't tell me
to. I hadn't been taking any multivitamins prior to
that. I am a little over a year out from bypass and
have no regrets. If I can help anyway, you can email
me anytime. ( ginmtuck@... ) Wishing you much
luck!
Gina

"Contentment isn't getting what we want but being satisfied with what we have."
"To love and to be loved is the greatest happiness of existence." --Sydney Smith

new to group

2007-01-29 01:09:17

Hi everyone,
I just finished my 6 mo. dr. supervised diet for insurance. I gave all
my paperwork to my pcp who is then going to fax everything to
Centennial along with the letter of medical necessity. She said that
the office had to do it themselves. Anyways, that was last Friday. I
don't know if I should call and ask if they got it faxed or wait a
little longer. Anyways, thats not my reason for the post. I've done
tons of research on the surgery and now I'm hoping to find out the
little details. I was wondering what you all had to do prior to
surgery.. did your surgeon require you to lose weight prior, if so how
much? What kind of tests, generally, were required. What kind of diet
were you put on for surgery purposes? Any information would be great
appreciated! Thanks so much!
April

Re: [PsoriaticArthritis] Hello

2007-01-28 16:51:10

Welcome Stephanie.......talk, vent or ask away.
Cindy

LAP BAND SURGERY

2007-01-28 16:14:18

I WANT TO THANK DR. DYER FOR A GREAT JOB WITH MY LAP BAND PROCEDURE. IT
WAS PAINLESS AND MY HEALING PROCESS WAS VERY FAST. HE DID A VERY GOOD
JOB OF EXPLAINING THE PROCESS TO ME AND MY FAMILY.

Dont mean to be insistent but...

2007-01-28 05:30:55

I really need to ask again if someone here lives in Canada and how much you pay
for your Enbrel. It's too expensive here in the US for me without insurance and
the Canadian online pharmacies don't reflect the price paid in a local pharmacy
in Canada.
I would really appreciate an answer as I'm getting desperate how will I do about
buying Enbrel in a near future.
Thank you very much
Monica

Re:Humira Pens

2007-01-27 21:14:06

Hi All,
I've used both and hate the pen. You have no control over the injection rate.
If I find the injection painful with the needle I can slow down and inject
slower. It helps me a lot.
Two nurses and my current rheumy have told me lots of patients do not like the
pen.
Hope this helps
Job in CT.

Re: [CMC-WLS] Digest Number 2427

2007-01-27 17:17:57

HELPPPPPPPPPPPP!!!!!!!!!!!!!!!!

O:K..I will admit..I knew that hair loss was part of this entire thing. I didn't, however, realize just HOW MUCH hair you can lose. Thank goodness I started out with a ton load of hair. Is there anything that I can do to slow it down at all? At this rate, I'll be bald by the end of February!

Betty

09/29/05

381/317

Spring Hill-Thompson's Station Support Group

2007-01-27 13:42:28

Wednesday January 11th from 10:30am to 12Noon we'll be meeting at the Saturn Union Hall in Spring Hill (behind Food Lion) and talk about Goal Setting for the new year! Ya'll come!

Re: [CMC-WLS] work for Metro?

2007-01-27 07:14:05

My mother works for Metro and they have BCBS and when they covered my surgery all but $800.00 which was my co-pay. That was 1.5 years ago and I'm not sure what there guidelines for coverage are now. They also approved my tummy tuck (for the bottom portion of my stomach). Good luck!!
Shannon <shannoncrabb2004@...

Hi, everyone! I am in the process of changing jobs and possibly working for Metro Nashville. Does anyone know if they cover wls? This will definitely help me decide whether or not to accept the position. I appreciate any info anyone has!

Shannon

work for Metro?

2007-01-27 00:39:54

Hi, everyone! I am in the process of changing jobs and possibly working for Metro Nashville. Does anyone know if they cover wls? This will definitely help me decide whether or not to accept the position. I appreciate any info anyone has!

Shannon

Nashville WLS Group meeting, 1/10/2006, 6:00 pm

2007-01-26 18:25:14

Reminder Reminder from the Calendar of CMC-WLS
Nashville WLS Group meeting
Tuesday January 10, 2006
6:00 pm - 6:00 pm
This event repeats on the second Tuesday of every month.
ADVERTISEMENT
click here

new here

2007-01-26 11:14:19

Hi I just joined the group my name is Vicky and I am a Hurricane
Katrina evacuee. I had a wonderful surgeon that all he did was WLS
and surgeries that were necessary to his patients later on. It was an
entire clinic dietician, phycial therapist, endocronologist you get
the picture well that was then.
I am finding it hard to find a PC that understands fully Gastric
Bypasses here in Lavergne fortunately my dr made sure we were well
versed in our surgery what warning signals were bad etc.
Now the thing I am missing is my support group due to various reasons
1 chief among them is the support group that they had daily that
anyone could just drop in on.
Any suggestions?
Vicky

Re: [CMC-WLS] new here

2007-01-26 06:41:56

Hi Vicky,

Dr. Jasovich (Jasovick?) in Murfreesboro (about 15 miles from LaVergne) is well versed in WLS. Also, there is a support group that meets in Smyrna at StoneCrest Medical Center on the 4th Saturday of every month from 10-12.

Hope that helps.
Vicky <lilmsreb@...

Hi I just joined the group my name is Vicky and I am a Hurricane
Katrina evacuee. I had a wonderful surgeon that all he did was WLS
and surgeries that were necessary to his patients later on. It was an
entire clinic dietician, phycial therapist, endocronologist you get
the picture well that was then.
I am finding it hard to find a PC that understands fully Gastric
Bypasses here in Lavergne fortunately my dr made sure we were well
versed in our surgery what warning signals were bad etc.
Now the thing I am missing is my support group due to various reasons
1 chief among them is the support group that they had daily that
anyone could just drop in on.
Any suggestions?
Vicky

Cathy Spencer (12/20/04)
http://www.PictureTrail.com/cathyspencer

Re: [PsoriaticArthritis] Psoriasis

2007-01-25 23:01:17

Hi Kelly,
P does not have to itch. Mine never did, but it also tends to go the "raw" root
vs. looking dry. I prefer to use Teatree oil mixed with shea butter to keep
under control. First it's all natural, the less chemicals on top of meds the
better right, and it's moisturizing. Since the teatree oil has a really strong
scent I suggest using it at night or if you will be home, you can supplement
with just shea butter during the day, which is also on its own, very healing.
Good Luck.
Cindy Penkoff <girlfriendgeneration@...

Hello

2007-01-25 20:42:59

Hello my name is Stephanie and I am 45 yrs old and live with my partner of 4
years. Who suffers with PS and has done so for 25 years and it is so
frustrating for him, I cant say how happy I am that I have found a group on the
Internet to converse with about this bloody horrible condition.
Stephanie Godfree <stephaniegodfree58@...

NY Times Article on Ceramic Hip Replacement

2007-01-25 16:29:48

See the article:
That Must Be Bob. I Hear His New Hip Squeaking:
www.nytimes.com/2008/05/11/business/11hip.html
Womyn Wear <womynwear@...

Re: [CMC-WLS] Digest Number 2421

2007-01-25 01:46:39

Hi William!

Just remember, that starting weight is now in the past. You will NEVER weigh that again as long as you do what the doctor says. I can't wait to see your pics!

For all the new people..Welcome.

I'm sorry, I can't remember everyone's name, however, I know exactly what you mean about the mind "games'. I kept THINKING I was hungry. I felt like I HAD to eat because someone else was. Finally, I realized the hunger was all in my head. It hasn't made it easier coming to that realization..but, it helped me realize that I wasn't obese because I was a pig. I was obese because my mind was playing with me. If there is anything I can do to help..or if you just need someone to listen...email me. We can either chat on the internet or I can give you my number.

For the person having the surgery in January. CONGRATULATIONS!!!! I had my surgery on Sept. 29th. I'm down 58 lbs. I feel so much better now. I'm off nearly all my medication. Am on Ibuprofen for my arthritis instead of Tramadol.

My advice for surgery is...afterwards, keep a pillow handy. Hold it on your surgical area everytime you move. And get up and move as soon as they say you can. Moving is so important. And make sure you follow doctor's orders.

May I ask where your having your surgery????

Happy Holidays!

Betty

09/29/05

Dr. Wright

381-323

Re: Psoriasis

2007-01-25 01:17:21

Kelly, I'm getting the impression that you have never had psoriasis
because of the questions you are asking about it. But I've never
heard of having psoriatic arthritis without having had the psoriasis
first. But then, I don't know that much about the PA. I can tell you
a little bit about the other, though. Ever since my initial outbreak
of Ps, I have had patches, or lesions, come and go, in greater or
lesser quantities, mostly from my waist on down. These lesions have
been red and scaly, but did not itch. I used just OTC moisturizing
creams to keep them under control. Eventually they would fade out.
The flares were of the pustular type and yes, they itched and burned
and just take a lot out of one. They required a different kind of
treatment, usually a prescription cream (by a dermatologist), and
long soaks in the tub using certain products that help relieve the
itching. My last bad flare was four years ago, so it has been a big
relief to have passed a few years without going through that. And
now, as I mentioned in a previous post, I am "clean" all over, since
having started on Methotrexate. But you are on MTX, too, and have now
developed a patch of psoriasis. So who knows how it happens or what will
make it go away. It's a very strange disorder.
Dorothy

Remicade

2007-01-24 14:53:41

I got my first infusion of Remicade yesterday and it went well. Last
night it was thunder-storming and I'm usually crying from the pain and I
wasn't. Then this morning I was a lot less stiff than usual. I think
its already helping me. They said that it may take 2-3 infusions, but

Re: [PsoriaticArthritis] Persistent problem

2007-01-24 09:23:13

Trina,
Sorry about the pain. One of the things that helps with my aches and pains,
including my elbows is to soak in a hot tub with liquid eucalyptus. 20-30
minutes works well, add hot water as needed.
Good luck
Cindy Penkoff <girlfriendgeneration@...

Humira "Pens"

2007-01-24 06:51:23

Have any of you experienced the Humira "pens"? The needle can be somewhat
painful and was wondering if this is an improvement.
Thank you,
"Shelley Sheridan" <sksherid@...

Re:Humira

2007-01-24 01:46:28

Hi Rachel,
It took 2 months for the improvement to become noticeable when I was on
every other week Humira. When it stopped working 6 months later and
everything came back with a vengeance my then-rheumy put me on every
week injections. That took a month or so to start showing improvement
and it helped for a while, but then I went under extreme stress and for
all intents and purposes it stopped working altogether (or, if it was
working I'd afraid to see what I shape would have been in without it! It
was the worst flare I have ever even heard of) so my now-rheumy started
me on Remicade in April.
Hope this is helpful, and best of luck with the Humira!!! I hope it
works for you!!!! :-)
Carla

Re: [CMC-WLS] new

2007-01-23 13:22:31

Melissa, I'm there for you if you need me. cathyjds@...
mq_nana <mq_nana@...

I had by pass surgery 4 weeks ago Monday and it has really been
different that are so many mind things going on I would just like to
talk to someone who has been there done that.
Melissa

Cathy Spencer (12/20/04)
http://www.PictureTrail.com/cathyspencer

new

2007-01-23 05:50:21

I had by pass surgery 4 weeks ago Monday and it has really been
different that are so many mind things going on I would just like to
talk to someone who has been there done that.
Melissa

Psoriasis

2007-01-23 05:49:00

Hi. I've had PA without psoriasis for about 5 years now - time flies.
I'm on Enbrel, Methotrexate and Meloxicam with great results- Also so
far no side effects on this combination.
This past Sat I noticed a small patch (1.5cm round) on the back of my
left shoulder which looks sadly like a guttate psoriasis patch (just
from online pictures - not an official diagnosis). My regular Dr.
gave me a .1% cortisone cream to use on it morning and night and I
will report back in the next week or so.
I have three (3) questions. 1) Is psoriasis itchy? This patch is
not; 2) How long does cortisone cream take to work? He never really
mentioned; 3) has anyone only had one little patch appear
(considering the meds I'm on I feel that maybe a missed dose resulted
in a patch breaking through?? maybe??) or do they usually appear in
bulk? I'll certainly bring this up with my rheumy when I go in two
months unless of course I have a serious breakout/breakdown before
then and force him to make me a dermatologist referral which in Canada
we are in short supply of.
Any comments would be appreciated.. I'd prefer to remain calm and
pray that this is not going to get worse... ;o) stress aggravates it
right?? ;o)
Kelly from Ottawa Canada

RE: [PsoriaticArthritis] Humira

2007-01-23 03:30:06

My doctor told me that it may not kick in for six weeks or so. I had
surgery in December and went off Humira.
I ended up with a horrible flare (my worst yet) and started back on
MTX/Humira a month ago. It hasn't kicked in yet, but I'm hoping soon!
Patty

saw the rhumy today

2007-01-22 17:02:29

I finally got to see the rheumatologist today. He put me on
Naprosyn, Celebrex and Enbrel. I am hoping that all of this will
start making a difference in my skin lesions and arthritis. I'm just so
relieved that I finally got medicine to take. Wish me luck! Angela

Re: [CMC-WLS] Digest Number 2417

2007-01-22 13:10:56

Hi Cathy and Julie!

Thank you both..you made me blush!

It is so awesome being happy to be a loser...lol

And to my buddy, William Greene who had the surgery on Dec. 15. You hang in there! I promise you after the first two weeks you'll be so happy you had this done. The first two weeks are the hardest! Just wait until you have that first weigh-in! You'll be so happy that you've done this!

Betty

Re: [CMC-WLS] Rutherford County Support Group Meeting, 12/24/2005, 10:00 am

2007-01-22 06:27:28

FYI--this month's meeting has been cancelled since it lands on Christmas Eve.

Rutherford County Support Group Meeting, 12/24/2005, 10:00 am

2007-01-21 19:40:09

Reminder Reminder from the Calendar of CMC-WLS
Rutherford County Support Group Meeting
Saturday December 24, 2005
10:00 am - 12:00 pm
This event repeats on the fourth Saturday of every month.
The next reminder for this event will be sent in 2 days, 2 minutes.
Notes:
Support Group meeting is at Stonecrest. email Diane Woodard if you need further directions or information, @ diane.richard@...
Pat Talley
and Veronica Scheuers are Co Moderators
ADVERTISEMENT
AdRevolver

Persistent problem

2007-01-21 13:54:18

So I am not new to these boards, but I do not post often. I was
diagnosed with PA in October, started Methotrexate in December, and
finally in January started Remicade IV infusions. Since then my
psoriasis has totally cleared up from my head, my nails are improving
daily. I struggle with eating because of severe nausea. I usually feel
crappy for a day after having my infusion, and usually start feeling
achy and stiff about 4-5 days before my next infusion. What I am
struggling with is my elbow. Originally it was my left elbow that
bothered me, but for the last 5 months it is my right one. I never have
relief from the pain. I had hoped that Remicade would help it, I have
mentioned to my rheumy, but he insists my numbers??? look good, I
cannot sleep at night because of the pain I have, I am constantly icing
it and heating it. I try using Lidocaine patches. I had little to no
strength in that arm. when I try to lift something it is extremely
painful. if it stays in a bent position for too long I have a hard
time to straighten it, if I keep it straight for too long I have a hard
time bending it. I am starting to wonder if I have some sever damage in
that joint or if this is now something totally unrelated to PA......has
anyone had any type of experience like this with any of their joints????
Thanks
Trina

Re: methotrexate

2007-01-21 09:02:05

Dorothy, I too was helped so much by taking Methotrexate for the psoriasis, what
a relief especially in the head. But it sure doesn't help the joints. I'm to
have surgery soon on a torn rotor cuff and I'm sure that was caused from PS.
thanks for being there, all of you Try to stay well, this summer should help.
Gin
NORMAN THORSEN <n_thorsen@...

Re: [CMC-WLS] Digest Number 2414

2007-01-21 05:25:49

Hi Group!

Merry CHRISTmas to each and everyone!

I have to say I'm enjoying my Christmas present to myself! Got weighed today and have lost a total of 56 pounds since my surgery on Sept. 29th. I'm down from 381 to 325! I'm able to sit in booths now..and in chairs that I was terrified to try to sit in before. I'm walking much better and can even stand up to take my showers now! This is the most awesome feeling! I'm so glad I did this!

Have a wonderful holiday season!

Betty

Sumner meeting

2007-01-20 17:34:13

We are having the Sumner County meeting this Saturday, Dec. 17, at 9 am at Hendersonville Hospital in Hendersonville. We meet in the meeting room that just inside the front door to the hospital and to the right. Attendance has been down some in the past months, so we hope to have a big turn out this month. See you there. doris

OT: Telling the family--about retirement

2007-01-20 14:05:58

Off topic
Manfred,
I checked out the pictures of your beautiful paradise. When I saw the
pictures of the volcano I thought, this is from Chile. It happens
that I went to Chile in 1953 with my parents who were missionaries,
and eventually married a Chilean in Santiago. We did not stay long
after that, though, as we moved to Sao Paulo, Brazil, where we lived
for the following 35 years. But how did you chose that beautiful spot
there in La Serena? Are you originally from Chile? The pictures are
spectacular! We were in Temuco at one time, but it was in the winter
and terribly dreadful. My husband's birthplace was Loncoche, which I
never had the privilege of visiting. Two siblings of my husband still
live in the Santiago area and it just happens that one of my sons is
visiting them this very week. I know all this is not related to PA,
but if you would care to share anything else related to that
beautiful country, you can email me direct.
"Dorothy Alvear" <DJeanLVR@...

Re: [CMC-WLS] Support Group

2007-01-20 12:21:22

Mark your calendars for the next Hopkinsville Support Group. January 9th at 5:15 p.m. Great meeting tonight. Hope to see more there in January.
jwilliams705resource <jwilliams705resource@...

We held our first support group meeting in Hopkinsville, KY last
night. I am so excited we had 6 members and 1 guest present. I felt
it was a productive and good meeting. If you want to join us, we will
meet again on December 12, at 5:15 p.m. at Christian County High
School 220 Glass Ave. in room 218. This is the same hallway as last
night for those who attended just further on down. If you have
questions about the group or want to attend and need more info, call
Julie at 270-707-1973.

Re: medication

2007-01-20 10:25:13

Hi Mary,
I use the thermacare heat patches on my neck when it gets so stiff I
cant move it at all. I put one on before bed and it usually feels much
less stiff in the morning. I try to settle it down with everything
else first though because they are quite pricey at between 4 and 5
dollars each. I have also used the lower back ones a few times. With
both of them I find you need to wear tighter cloths to hold them in
place cause they don't stick that well through the night. Heat really
seems to give me a lot of release even if it is only temporary, if you
find that also I would recommend them as a product.
Megan

Centennial Sportsplex

2007-01-20 00:03:24

Just wanted to post a note to those of you in Nashville -- in today's
Tennessean, I read in Miss Cheap's column that Wednesday is the once-a-
year sale at Centennial Sportsplex on an annual membership.
I think the regular price is $400, and this $200-something (can't
remember the exact amount). If you're interested, I'd give them a
call, as they truly only do this one day per year.
Hope everyone is having a great Holiday season!!!
Diane (DeForest) Woodring

Re: [PsoriaticArthritis] Arizona weather is it good for PA?

2007-01-19 14:57:51

Raul,
Hot, dry weather. this is what you need.
Me, I leave in Tel-Aviv, Israel, on the Mediterranean Sea, which is humid. So
every year I travel to the DEAD SEA in east Israel for a period of 4-5 weeks
each time.
It makes me feel much better. Stronger. With full of energy. It does not last
for ever so I do it twice a year and the filtered strong sun there is
fantastic.
By the way it is called Climate Therapy. Yes climate helps in the case of PA.
Arie

Nashville WLS Group meeting, 12/13/2005, 6:00 pm

2007-01-19 12:07:25

Reminder Reminder from the Calendar of CMC-WLS
Nashville WLS Group meeting
Tuesday December 13, 2005
6:00 pm - 6:00 pm
This event repeats on the second Tuesday of every month.
ADVERTISEMENT
[LINK]

Re: [CMC-WLS] Digest Number 2412

2007-01-19 04:35:12

I read on one of the support sites (may have been this very site, I'm not sure) that if you find yourself gaining, go back to the beginning of the cycle. Not sure I could do it though. I truly don't think at this point I could go back to liquids, then pureed, etc...

Not sure how I survived it the first time around.

The only advice I can come up with is make sure your eating healthy. Count your sugar grams. Stay totally away from carbonated beverages..and as much caffeine as possible.

I know this isn't much help..but, it's the best I can come up with.

Good luck and God Bless

Re: [PsoriaticArthritis] hip impingement?

2007-01-18 18:16:14

Have you tried a shot of cortisone for the bursitis. They can also give you
pills but the shot works better.
It worked wonders for mine years ago. My hip was smashed up in an auto accident
and 92 and I have a huge mass of wires holding it together. I really thought at
the time I was in so much pain that I was finally looking at a hip replacement
but the doc x-rayed it told me I had a screw working loose and some bursitis.
He gave me the shot and within 1/2 hour I saw a huge amount of relief. I
shouldn't have been so bull headed and went in to have it looked at months
earlier. I will never let it bet that bad again.
Celeste

Arizona weather is it good for PA?

2007-01-18 15:17:59

I been thinking of moving to Yuma, AZ, and try to see if that might
help with my PA. I just want to know if anyone out there has had to
move because of PA. I just went through two winters in central
California coast and I just can't take another one. It seems that my PA
gets so much worse in winter. Let me know.
"Raul" <raulalex67@...

RE: [CMC-WLS] Groups

2007-01-18 13:07:59

Yes, every Thursday and Friday at 12 noon at the Center

Hopkinsville Support Group

2007-01-18 10:46:01

The Hopkinsville Support Group will meet December 12th at 5:15 p.m. at Christian County High School in room 218. Hope to see all there. Bring a favorite recipe to share with the group......legal of course:)

hip impingement?

2007-01-17 22:14:50

Well, the messages are flowing again so obviously I'm back from the
funeral. Hip was killing me the whole time, and I had to use my
arm-brace crutch the whole time. When I got home the recent MRI
report was waiting for me -- turns out I have an impingement on my
hip. That and I'm low on joint fluid. There's more -- some atrophied
muscles, bursitis, an "ossified bump" -- but I'm curious about this
"impingement" deal. And I guess tge joint fluid is related. Has
anyone a=had something similar? How did your doctor treat it?
Cheers,
Robert, North Jersey

Re: [CMC-WLS] Digest Number 2411

2007-01-17 17:55:38

Hi!

It's me again! Thank you both for your kind words. It's so awesome to see the scale tip in the RIGHT direction for a change.

As for the question as to if I stray somewhat....I hate to admit it, but yes, I do. I always try to make sure I don't have anything in the house to be a huge temptation though. I keep sugar free candy around and yogurt just incase I'm tempted. It's hard not to be tempted when you live in a house with kids who are constantly snacking. LOL

I hope I can make it to some of the support meetings soon. I've done great so far..but, would be nice to be around people who are going through the same things I'm going through.

Happy Holidays!

Betty

Re: [PsoriaticArthritis] methotrexate

2007-01-17 10:14:29

Thanks for the info about the article. I have rejected taking methotrexate for
my psoriasis during the past 15 years, after reading through all the long list
of side-effects. However, coping now with psoriatic arthritis, I finally
consented to give it a try. I don't see that it has done that much for the PA as
yet (maybe because I'm only taking "baby doses" to begin with), but
surprisingly, what psoriasis lesions I had when I started this three months ago
have totally cleared up and for the first time in 15 years my whole body does
not have one lesion. I hope it eventually works for the PA as well, without any
side-effects.
Dorothy

Groups

2007-01-17 03:45:07

Wondering if Dr Fry is still meeting on Thurs and Fri and how about
the night Coaching for Victory-can someone help-and give me a clue?

Re: Telling the family--about retirement

2007-01-16 23:37:08

Dear Barb,
Don't feel guilty! Look below...
At 50??? So late? I retired in september last year, at 41! No, I don't
feel guilty. My parents worked till 65.
You have to free yourself of that load! One should feel guilty when one
IS guilty. But retiring, be it for a "sound" reason, or simply to enjoy
life, is not something one has to feel guilty about! I think that
instead the people who life for working should feel guilty for wasting
their lives. I always said that I work for living, and don't live for
working. As soon as it looked like I had worked enough to live, I stopped.
The PA, making me sleepy and tired, might have played a role, but in
truth I had planned since childhood to retire at 40, and I didn't have
PA back then.
For me it was no problem, specially because it was so long planned! I
had been saving for a long time. My mother is always worried that I
might not have saved enough, while my father trusts my math! But the two
of them also are happy for me to be enjoying life as best I can.
You might want to have a look what I'm doing with my drab little life in
early retirement, here:
http://ludens.cl/paradise/paradise.html
Manfred.

Re: [PsoriaticArthritis] Telling the family--about retirement

2007-01-16 18:46:35

Barb: you're a responsible adult who's making the best decision for YOU. Your
family can make you feel guilty only if you allow it. They can say whatever
they want, but it's what you think/feel is right in your own mind that counts.
Joanna Hoelscher

Re: [CMC-WLS] Digest Number 2410

2007-01-16 14:08:19

Hi Group!

Just wanted to update on my weight loss so far. Had the surgery on Sept. 29th, at Vanderbilt. My total weight loss to date is 51 lbs. I truly believe this is the best thing I ever did for myself.

Everyone have a wonderful holiday seaon!!

Betty

381/330

Re: [PsoriaticArthritis] medication

2007-01-16 06:08:44

HI List,
Has anyone used the thermacare Heat patches on the neck? I
have a new area of pain that I had before But not as consitent as
now. I am not due to see the Rheumatologist until end of the month. My
pain is at the base of the neck and moves in a circle at the base of
the neck. Sometimes it throbs. This is basically a new area of pain for
me. I have been affected in my ankles, knees, heels, thumb, fingers and
toes.. and it settles more in the bigger joints and seems to travel in
the rest. Sometimes it feels like I banged it but otherwise not a
terrible problem. But my neck really bothers me . Do they give coritsone
shots in that area? I have had shots in my heals, ankles and knee. I am
taking celebrex once a day and added another for the pain as needed.
OH... yes.. The fatique is also a problem for me.
Mary

methotrexate

2007-01-15 23:10:12

I know that many people on this board take methotrexate for
psoriasis/psoriatic arthritis. You may be interested in an article in
Psoriasis Advance, the
magazine of the National Psoriasis Foundation, titled "Methotrexate: a
primer."
It covers monitoring, options and ways of reducing side effects. I do not
take methotrexate, so I was surprised to learn that people who do should avoid
ibuprofen, aspirin and penicillin.
The article appears in the May/June 2008 issue which is apparently not yet
available on-line. However, I suspect it will soon appear on the National
Psoriasis Foundation's website www.psoriasis.org. Those interested in reading
the article should check the website periodically, clicking on Publications in
the top menu bar, to see if the May/June issue has been uploaded.
BeingIrish

flu shots

2007-01-15 21:37:55

I had the surgery in October. Is there any reason, I should not take the flu shot?

Imformation needed!!!

2007-01-15 11:02:57

Hello Debbie. I need to ask you about plastic surgeons. Who would you
reccommend for tummy tuck, lipo, and legs? I want to have these done in early
spring. My husband and I are going to Hawaii in Sept. 2006 for our anniversery.

Christmas party

2007-01-15 01:45:41

Please note that the Christmas Party is an "adults only" event - no children please. I can't wait to see all of you there!!!

Thanks you,

Debbie

List off until Tuesday

2007-01-15 01:00:44

A death in the family means that I have to fly to Michigan and will be
unable to moderate the list from about noon on Saturday through noon
Tuesday.
RA Harris
North Jersey

Telling the family--about retirement

2007-01-14 12:30:26

This weekend I will be seeing my family for the first time since the
"retirement". Both parents are in their 70's and still work full time. My
grandmother is in her 90's and recently retired so I am sure to get an
earful of why am I being so lazy or we didn't struggle to help you through
college and graduate school to do this at 50.
Yeah my family is Jewish and guilt is served in major portions! I will keep
you all posted. How did people deal with telling their families.
Thanks in advance!
Barb._,___

Christmas party

2007-01-14 09:10:13

The invitations are out for the Christmas Party. It is Friday, Dec 16th at 6 PM at the Select Inn (Holiday Inn) across from Centennial Park on West End Avenue. There is a block of rooms reserved for those wanting to spend the night. All the information will be in the invitation and I will also have it added to the Website.

Injections ?

2007-01-14 08:00:35

Hi:
I usually lurk when I can. I use all the regular Doc's & also a
Holistic Dr., acupuncture helps me tremendously. Since January I have been
dealing
with Pa on the bottom of my feet YUCH, I walk, it bleeds.
My Dermatologist had given me a script for Talconex(?) very expensive & not
working. Today my Holistic Dr. looked at my feet & one spot was turning
grey. I just stopped by my dermatologist & received injections in several
places & come back in a month. Has anyone tried this & did it work, how long?
He
said he was impressed I did so well. I told him to try Fibro & Humira.
I learned so much for your wealth of information.
Thanks
Karen

What to do with yourself when you become disabled

2007-01-14 00:58:02

Someone asked this question recently. I just stumbled upon a blog post
by a person who has PA plus pulmonary fibrosis. It's called "Stop
Waiting To Die - What To Do When You're Diagnosed With An Incurable
Disease." It's very uplifting and inspiring. You can find it at:
http://diseases-articles.blogspot.com/2008/05/stop-waiting-to-die-what-
to-do-when-you.html
Enjoy,
sherry z

Re: [PsoriaticArthritis] What's in a name?

2007-01-13 17:08:59

I hadn't thought about chronic auto immune disease. When I mention PsA they have
no idea what I am talking about. Fibro people know but still dismiss as a made
up disease .....when I mention my asthma they get it but unless they have it do
not have a clue how scary it can be.....anyone else waking totally on the
deformed bone? I don't have any padding in my feet anymore.
anne moody <dearmaxie@...

Re: What's in a name?

2007-01-13 13:00:24

Dear Anne,
Normally, when someone really wants to know what type of arthritis I have,
which is rare, I tell them its technical name is psoriatic arthritis. But
that there are over 200 types of arthritis and I have more than just one
type. I mention Osteo Arthritis, Osteoporosis, Osteomalacia, Fibro, and
even possibly RA. If they ask me what the difference is between PA and RA,
I usually just say that RA deforms the bones more, and PA attacks the
tendons and ligaments and can attack other organs in the body. Its a hard
disease to explain to anyone and I can understand why they are confused. It
confuses me most of the time and Ive read a lot about it.
I have to agree with you about Asthma. Ive had that for many years and
unless you experience what its like to not be able to breathe it is hard to
understand or if they actually witness an attack. I just tell them its
like choking and not being able to take a deep breath in, since you cant
get the old air out. I sometimes mention that my whole family has it, both
my parents passed away with asthma and emphysema, and I lost a 6-year-old
brother during an asthma attack. That normally makes them realize it can be
serious, but most of the time I dont get into all this detail. It depends
on the person and how close I am to them.
As far as walking around on deformed bones, I guess I have to say thats me
too. I finally broke down and got a power scooter and I have to say it has
saved my life. So far Ive only used it in the house, but the week before
it came, I was to the point that getting from room to room with only my cane
was harder and harder. Both of my knees are shot and I need both replaced,
along with both jaws and probably at least one hip. Ive been putting it
off as long as I can due to my surgeon not wanting to operate on me. He
considers me high risk and says the rehab will be hell on me since Im out
of shape from being so ill. Plus since Ive been on Arava he is nervous
about operating on anyone who has taken autoimmune suppressant drugs. He
said he lost a patient last year due to infection and another one lost a leg
due to the same problem. So he isnt ready to take me on yet. Ive got the
info on a high risk surgeon and plan to call him, but other medical problems
have come up that had to be taken care of first.
I guess it all boils down to just not caring anymore what people say or
believe. Its what you know is true and if they dont get it, they just
consider it ignorance and I tell people they are lucky they dont have to
understand how this disease works. If they still want to think Im faking
it, then they can just leave me alone. All the people who love me
understand, even though it took some of them longer than others to realize
just how bad it was. Everyone wants to deny bad news, but unfortunately it
doesnt make it go away.
I hope you get some relief soon for your PA and things start to brighten up.
Its not an easy disease to deal with unless you respond really great to the
biologics. Unfortunately, I cant take them due to allergies. Ive taken
Arava many times, but it still has its down points as well. There just isn
t an easy answer for our problems. You just have to hope that eventually
people realize whats wrong and learn to show compassion.
Take care of yourself. Fran in Florida

Re: Celebrity spokesman?

2007-01-13 02:54:33

Thank you for sharing this Sherry! My son with PA lives and
breathes sports. I like to share things like this with him so he
knows that he is not alone and he can still do whatever he wants as
long as he wants it bad enough!
Thanks! Karen

What's in a name?

2007-01-13 00:12:08

Some interesting posts recently, particularly regarding other people's
perceptions of our
wretched disease.
I've just this morning returned from an appointment with my rheumatologist, who
tells me
that (thank goodness) my arthritis seems to be in remission, despite weaning me
off
methotrexate and sulfasalzine -- the bad news, however, is that the fibromyalgia
is
considerably worse, and he has no proven remedy to offer for the discomfort that
that
brings.
When I got home, it struck me yet again what a poor name "Psoriatic Arthritis"
is for our
condition. At the moment, I am often quite disabled by the symptoms of
fibromyalgia,
extreme fatigue and brain fog, but have very little psoriasis or arthritis-- yet
it's still
called Psoriatic Arthritis! No wonder people have problems understanding what's
happening to us.
Some years ago, when I first joined this group, I suggested that we would get
more
attention, and more understanding, if the disease had another name -- one that
better
reflected the whole bundle of symptoms that comes with it ... psoriasis,
arthritis,
fibromyalgia, tendonitis, iritis, fatigue, cognitive fog etc etc etc. I've found
telling friends
that I have "a chronic auto-immune disease" has more effect than mentioning PA.
When I brought this up with the group before, I foolishly suggested adopting the
name of
a high profile PA sufferer, Dennis Potter (writer of The Singing Detective), but
"Potter's
Syndrome" brought images of Harry rather than Dennis, or a repetitive strain in
the
ceramics industry, to most people's minds.
Any ideas, anybody?
Best wishes to all
Marcus

Celebrity spokesman?

2007-01-12 17:55:06

Did y'all know that Jeff Feagles, punter for the Giants, has
psoriatic arthritis?
"Feagles' career nearly ended about three years ago after being
diagnosed with psoriatic arthritis, a condition that was affecting
his knees.
"It really kind of forced me to semi-retire, but medicine helped me
conquer it and get back in shape for the season," he said.
"I was a long-distance runner and had to give that up, so I turned to
swimming and it's really given me the cardio workouts I need. I also
take part in all of the conditioning camps that the team runs since I
live in New Jersey."
The inflammation nearly cost Feagles his streak in 2006, right before
he was to play in his 300th straight game."
http://www.dailyfreeman.com/site/news.cfm?
newsid=19659190&BRD=1769&PAG=461&dept_id=82700&rfi=6
regards,
sherry z

Re: Did the Walk today!

2007-01-12 14:28:06

YOU GO GIRL!!!

Re: Are these symptoms or something else?

2007-01-12 05:32:17

Cindy - don't let it all worry you. Each one of us is different and
what happens to one does not necessarily happen to another. Just
deal with the symptoms you have and don't borrow trouble. It does
help, though, to know what is possible so you will recognize it if it
does occur. I've never had costochondritis, which is a pain in the
chest making it difficult to draw a deep breath without pain, caused
by inflammation of the connective tissue around the ribs. But I'm
glad to know about it, so I won't panic if it should happen to me.
The fatigue, though, is almost certainly related to your PA. One way
to think of it is to remember how fatigued you get if you have the
flu. That's because your body is fighting a war against the flu bug,
and it takes a lot of energy. With an autoimmune disease like PA,
our bodies are fighting BOTH sides of the war. It's a war of our
body against itself - very exhausting.
The weight gain is also common amongst us. I went from working out
45 mins. to an hour 6 days a week to nothing almost overnight. That
messes with your metabolism big time. I also think (and there is
increasing evidence to support it) that inflammation itself messes
with our body's metabolic processes leading to weight gain.
The good news is that if you can get the disease under control as I
have increasingly done with the Humira, you will see an improvement
both in energy level and weight control.
Chin up, girlfriend!
sherry z

[Psoriatic Arthritis] My Arthritis keeps me in a wheelchair or scooter

2007-01-12 00:17:17

Barb
I would love to help with that website. Unfortunately, with my hands it is very
painful just to type. However you can be assured that I will be a faithful
reader and contributor.
Best to you
Walt

Did the Walk today!

2007-01-11 16:26:42

Hey everyone,
Just celebrated my first year of "No Pain, No Cane!" at the Arthritis
Walk in Los Angeles today. Okay, so I made it one year without having
to use the cane, but I do have pain now and then still...but it's
nothing like how it was in April 2007 when I was virtually bedridden
and in the throes of "9" and "10" level pain.
Shout outs to all of you, as we raise money for Arthritis Awareness
Month and for a cure for our affliction.
--Vera

Re: [PsoriaticArthritis] Are these symptoms or something else?

2007-01-11 09:51:16

This is a symptom of PA. At least for me. I cannot go a day without a nap now.
The weight gain can happen especially if you are on Prednisone. Hope you feel
better.
Walt

Re: [PsoriaticArthritis] Temporarily going off Enbrel - need advice

2007-01-11 05:50:36

If it were me I'd get this done and over with so you only have to interrupt your
treatment once. In the mean time make sure you talk to your doctor about
providing you with with medications you can take to help control your pa and any
flares in between.
Celeste

Re: My Arthritis keeps me in a wheelchair or scooter

2007-01-10 20:40:40

Walt, people are clueless and self-addicted! We have an opportunity to
help them look outside themselves.
I just tell people that I get a certain number of steps each day and
the number is a mystery - I never know how many I will get on any given
day. So I have to decide how I will spend each one. Some days I will
park in handicap so I can walk long enough to get everything I need at
the grocery. Other days, I only need to pick up one thing and so I am
willing to spend my steps in the parking lot and I park far away to
make me feel less disabled. Some days I can take a walk down my
driveway for exercise. Other days, my steps are all spent before the
mail comes and I have to take the golf cart down to the mailbox.
Hope today is better for you,
sherry z

Temporarily going off Enbrel - need advice

2007-01-10 12:30:43

On Monday, I'm having a minor surgical procedure on one eye and my
primary care physician and my rheumatologist instructed me to go off
Enbrel a week before the procedure and stay off it until the threat of
infection is completely gone - likely about 2 weeks. I have read that
some of you have found that Enbrel (and I assume the other biologics)
never work as well once you go off them for a time; but for now, I seem
to have no choice, even though the eye doctor said I could stay on it.
Here's my dilemma, though, if any of you have had similar experiences
or have relevant advice.
I'm currently scheduled to undergo a second, similar procedure on the
other eye in one month - which, for all practical purposes, means that
I would have to stay off Enbrel for about 7 weeks. (There is a one
week gap in between where I might take it but don't think for one week
it would be worth it.) Do I go ahead with the second surgery so I only
have to go off the drug once (and 7 week off it scares me) or do I
reschedule the second surgery for fall, go back on it as soon as I can
but risk the possibility of increasing even more my chances that it
will not work as well.
"Joanna Hoelscher" <joannahoelscher@...

RE: [Psoriatic Arthritis] My Arthritis keeps me in a wheelchair or scooter

2007-01-10 05:34:58

Boy can I relate to the stupidity people demonstrate towards people with
disabilities. I look at it from my deaf world and then also the newly
limited world of having PA. I can't begin to tell you how many times how
many times people will see me using my cochlear implant and Signing at the
same time and then say to me "why are you doing that with your hands you
hear me just fine." The worst I have to admit are my family because they
knew me before I lost my hearing they do not understand how my life had
changed. Add to that the PA and the immobilization at times and it is crazy
talk from them.
Most of the time I get the impression that they think I am lazy and that is
why I sleep so much or that I am ignoring them and really can hear them. I
have learned that most of this is their own inability to " get it" that this
is real. As for strangers, I have learned that people have a much easier
time dealing with temporarily disabled people for example someone with a
broken leg as opposed to using a scooter. IF someone has a broken leg and
is on crutches people fall all over themselves to open doors for them or
help them into cars etc. Now they see a person with a long term i.e.
permanent disability and they avert their eyes, don't want to look and don't
offer to help. I think some of this has to do with shame, fear and anxiety
on their part. Shame that they say to themselves, thank g-d that is not me
or my children etc.anxiety because maybe they do have a child, spouse etc
with a permanent disability or fear that this very well could happen to
them.
When I was younger and people treated me badly or invisible because of the
deafness I would get angry and tell them to kiss my ass or if they would not
look at me to talk I would tell them it is not contagious. As I have gotten
older and now with the PA and the limitations I now have the frustration
arises again when I catch them doing weird ass things...but I know after all
this life experience that they are just not educated and I just say things
like "Until you walk in my shoes do not judge my disability..thank you Aka
under breath say to myself instead of thank you F**K You very much" and
then go about my life.
I did a search on the web with the term "coping with becoming disabled" and
found almost nothing. I would be game for setting up some kind of web site
that would be an educational tool for newly disabled folks to use as a
resource. Anyone interested in doing this with me?
Thanks
Barb

Are these symptoms or something else?

2007-01-10 01:17:28

I have noticed severe fatigue in the last year or so. I have to nap
during the day or I can't function. I have also had weight gain from
the inactivity, from being tired. Is this common?
I hear you all talking about not being able to concentrate to read
etc. Is this something I have to look forward to? I am a writer,
this could be an issue.....hahaha
When I have "flare ups" of the PA, I feel like someone beat me up and
I have noticed that the P shows up as well. Although, I do seem to
have visible P more often than the overall soreness. My pain tends to
be concentrated in areas. Not always the same one, but, areas none
the same. I worry about the debilitating pain you also mention.
I have a 9 year old with CP. Luckily he is not severe but he still
has challenges. I can't be a "lame duck" for him. Then expect my
husband to take care of 2 of us.
This becomes more worrisome by the day.
"girlfriendgeneration" <girlfriendgeneration@...

Re: [PsoriaticArthritis] WellChild award in UK honor girl, 15 with PA

2007-01-09 19:37:43

Not heard of this either but there is someone in Chicago who is using stem cells
on people with auto-immune diseases who have tried every other treatment and
nothing has worked.
Joanna Hoelscher

Re: [PsoriaticArthritis] My Arthritis keeps me in a wheelchair or scooter

2007-01-09 19:35:07

<<My Arthritis keeps me in a wheelchair . . . most of the time, but . . . I
was feeling better and decided to go out in my walker. . . . One woman actually
said that she knew I had been faking a lot of this the whole time. What is
wrong with people?
I know what you're feeling. Sometimes I need to use a disabled parking spot
and I do, other times I don't need it and don't use it. People have asked why
I'm so "erratic." Sometimes I use a cane but most of the time I don't ==
"what's up with that?," I'm asked.
I try to see it from their point of view. Most people think that arthritis is
only for
old people, and I'm 48. Ok, say you try to explain it to people (we've all
tried) it goes something like "See, I have this skin condition which comes
along with an degenerative joint disease . . . "
Most people have difficulty wrapping their mind around the fact that a young
person can have arthritis. Add to that the weirdness of a form of arthritis
that is related to a skin condition. Okaaay . . .
Remember when your doctor first explained it to you? Psoriasis -- arthritis --
autoimmune . . . I was originally diagnosed by a podiatrist and I thought he
was nuts. How could a skin condition be related to a joint disease? He sent
me to a rheumatologist and I didn't tell her what the foot doctor had said, I
just told her my symptoms. When she explained pretty much what the podiatrist
had I was still pretty leery of the whole thing. What convinced me was a) the
intense pain, and b) the sausage digits, and finally c) the meds prescribed by
the rheumy began to work.
Now think of the woman in the mall parking lot who sees you park in a disabled
spot but stand up and walk away from your car. Or the co-worker who sees you
with a cane one day and without one the next. They haven't had several doctors
patiently explain the disease to them, they haven't had the pain, they haven't
had to decide "cane today or not?," they don't have the sausage digits, they
haven't seen the improvement that comes with the ministrations of a specialist
physician.
As hard as it was for me to understand what was going on with my own body, it
is almost impossible for the non-sufferer to understand. In most cases you can
explain it to your family and close friends, but casual relations and strangers
will never understand. There was a time when I tried to educate people, but I
soon found it to be useless. Now if I say anything at all I say that I have a
degenerative joint disease and leave it at that. Anything else is a waste of
their time and, more importantly, my own.
I find that most people will let it go, and that I don't care what the rest
think. And the people who accuse you of faking it or having a psychological
problem, or the stranger who takes you to task for using a disabled spot, well
they're just plain rude. And, in my world, rude people can just bugger off.
Cheers, Robert
North Jersey

RE: [PsoriaticArthritis] Was: Retiring on Disability-Now: Using your free time

2007-01-09 12:24:51

I too do not enjoy reading. I am not sure if it is age or what but when I
read I can't focus or see as well. I just had my eyes checked and my am
very far-sited all of a sudden. I am also used to being very active. If I
was born later I think I would have been diagnosis as having ADHD. Being
50 its kinda hard to be stuck in my body when my mind is racing!!!
Barb

Re: Was: Retiring on Disability-Now: Using your free time

2007-01-09 07:30:45

Good suggestion, Liz. I'll throw in gardening and cooking, too.
I've never had a kitchen garden before, so I started small last year
with just herbs - basil, rosemary, parsley, oregano. This year I've
added dill, and 3 tomato plants and one eggplant. I've already got
two tomatoes growing larger by the day. No sign of color yet,
though. My husband takes over tending them when I have bad days or
bad weeks, like this one.
regards,
sherry z

Re: New drugs for P and PA

2007-01-09 01:09:57

hi,
I have been in clinical trials for a new drug for mod to severe
plaque psoriasis, and apparently is supposed to work for arthritis as
well, though it hasn't done a thing for the arthritis yet...however
it has really cleared up my psoriasis. I had (had because this drug
has really cleared my skin for the first time in 25 yrs, amazing)
severe psoriasis all over, even my face and including all of my nails and low
and behold it is clearing that as well....if you would like to read
about this study you can google "abt874" and it should come up...
"arla0909" <arla0909@...

My Arthritis keeps me in a wheelchair or scooter

2007-01-08 23:13:01

My Arthritis keeps me in a wheelchair or scooter most of the time, but the other
day, I was feeling better and decided
to go out in my walker. What a controversy I started. One woman
actually said that she knew I had been faking a lot of this the whole
time. What is wrong with people?
Walt

Re: New P and PA information site

2007-01-08 13:42:15

Thanks for posting this information, Sherry. PAPAA has a wealth of information
on all sorts
of things which it sends regularly to its members in the UK, and a very good
magazine,
"Skin & Bones" -- highly recommended for any P or PA sufferers in Britain. It's
recently had
a bit of a face lift, changing its name from the (not exactly snappy) "Psoriasis
and Psoriatic
Arthropathy Alliance" to simply "papaa" (thank goodness!), and generally making
it a bit
more user friendly.
I didn't know about the revamped website though -- and I'm a member! I've
probably
fallen through the net somehow, so am grateful for your update.
Best wishes
Marcus

WellChild award in UK honor girl, 15 with PA

2007-01-08 06:15:57

These awards "honour the bravery of severely ill children and those
who work to improve the quality of their lives."
From YOU Magazine:
"Jodie McLoughlin, aged 15
Like any mother, Tracy McLoughlin's instinctive response when she
sees her daughter wince with pain is to want to soothe her.
But countless times every day she has to check herself.
For Jodie, 15, lives in near-constant agony from psoriatic arthritis.
"Usually the best I can do is sit close by because physical contact
is excruciating for her," says Tracy.
Jodie, from Bradford, West Yorkshire, is so severely affected that,
despite several operations to try to straighten her clenched hands
and feet, she is now confined to a wheelchair.
This is only one of her multiple health problems.
Jodie also has Turner syndrome, a rare chromosomal abnormality that
restricts growth. She weighs just three stone and, although she loves
fashion, she must wear clothes designed to fit six-year-olds.
You might assume that such disabilities would cause Jodie to have a
restricted life.
In fact, she attends Bradford Academy, a mainstream school where she
is well known for her cheerful disposition.
"She's positive, motivated, determined. In over 30 years of teaching,
I have known no one more deserving," wrote her teacher Pauline
Rossiter in nominating Jodie for a WellChild Award last year.
The judges agreed and Jodie, who won Bravest Child, travelled to
London to meet Prince Harry and attend a star-studded awards
ceremony, where Westlife and Rod Stewart were among the guests of
honour.
"Prince Harry told me that they'd picked me for a special reason. I
think it might be because we have the same colour hair," Jodie says
shyly.
Jodie is currently undergoing chemotherapy to prepare her for a bone
marrow transplant, in the hope that it will alleviate her arthritis.
The treatment has made her more tired than usual, but she is
determined to continue with her daily routine.
This summer, she hopes to take five GCSEs.
Tracy, 46, who is divorced and has three older children, says, "Even
when she's not well enough for school, she insists on going."
Jodie explains: "All my friends are there, and doing my work takes my
mind off my problems. For me, keeping busy is the best medicine."
End of article. My comments:
Reading about Jodie certainly helps me be braver - what an
extraordinary young woman!
I've never heard of bone-marrow transplant as a treatment for PA.
What am I missing?
I wonder whether Jodie had the opportunity to receive biological meds
to treat her PA. If not, I wonder whether they might have prevented
the damage to her hands.
your thoughts?
sherry z

Re: [PsoriaticArthritis] Hi, I am new here

2007-01-07 18:07:36

Daniel I suggest you find a new doctor. I may be off and he may just be being
thorough but it sounds like you need and ortho guy, and a good one.
Wait to see what he comes up with and then think seriously about a second
opinion. You don't sound like you have confidence in this Dr. therefore my
advice is to trust your gut.
There is a natural herb for swelling, not for pain, called Boswellia. Check it
out at your local health food or oriental health store.
Good luck.
Cindy Penkoff <girlfriendgeneration@...

New drugs for P and PA

2007-01-07 15:06:42

I've been reading about some new drugs in the pipeline:
"One new product, Centecor's ustekinumab, was filed in 2007 for the
treatment of chronic moderate to severe plaque psoriasis and is
scheduled to launch this year.
The other product, golimumab, was filed for the treatment of rheumatoid
and psoriatic arthritis, and will launch in 2009."
Has anyone here been involved in clinical trials of these drugs, or
have any information about them?
I'm happy to hear that some new things are becoming available - in case
my current drug stops working for me, it's good to have lots of other
options!
thanks,
sherry z

New P and PA information site

2007-01-07 11:28:34

"On the 1st of May 2008, UK charity, the Psoriasis and Psoriatic
Arthritis Alliance (PAPAA) is launching its new website
http://www.papaa.org under the banner of The Principal Source of
Information for Psoriasis and Psoriatic Arthritis. PAPAA is providing
an up-to-date resource that will give people with the latest
information about the condition along with what treatments are
available and useful articles.
PAPAA is independently funded and doesn't receive financial support
from the commercial or pharmaceutical industry. The site is managed by
PAPAA with real input from people with or affected by psoriasis and
psoriatic arthritis."
FYI,
sherry z

Hi, I am new here

2007-01-07 01:53:46

I just found out one of the codes the doctor is using is for PA. I
looked at the websites and I am kinda scared now. I have no symptoms
of P. My nails are all clear as well. I have had a long history of
problems with my foot after tearing my achilles tendon, twice!! The I
fell at work and now have back pain, a torn rotator cuff, and hip and
leg pain. I think the Doc may have made a mistake. I have had no
arthritis up to this point anywhere but my ankle. Would be interested
in your thoughts! I am on a ton of pain medications to get through the
day. If anyone knows some natural things that would help I would love
to hear about it as well. I am 48 years young.
"danield1viking2000" <danield1viking2000@...

Was: Retiring on Disability-Now: Using your free time

2007-01-07 01:13:45

I get my PA list by digest and seldom speak up or out! :-) However, digest
#4449 seemed particularly pertinent today to lots of issues we all have to
deal with at various times.
Ive found that I dont enjoy reading as much as I did before PA..just a
little foggy brained, but sewing/quilting/machine embroidery have been
wonderful hobbies for me. Id recommend this as a rewarding Time Killer
for anyoneincluding you males! My husband has may end up better at this
than I amsorta his inside workshop. It is a hobby that can be started
with minimal financial resourcesa good used sewing machine; a piece of
fabric, needle and thread; or you can spend some big bucks and buy lots of
expensive toys! Side trips to buy fabric and toys plus bountiful shopping
on the internet can get almost addictive. So all you Y chromosome people out
there in PA land, and you gals too, consider some sort of sewing/crafting in
your repertoire of do-able activities. It is particularly adaptable for
folks with PA limitations.
All the best,
Liz T
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8:02 AM

Re: [PsoriaticArthritis] Retiring on Disability due to PA-it was approved

2007-01-06 14:07:50

Barb,
That's good news that you are approved so at least you have some income to rely
on. Now that you have that to fall back on I would take the nest step to get
approved by social security for disability. It can take a long time to get
social security to go through so I'd start the process as soon as possible.
Celeste

Re: Retiring on Disability due to PA-it was approved

2007-01-06 11:38:07

Barbara, congratulations. I know that it is a mixed blessing. I had
to close down my successful business that I had proudly built single-
handedly. So I really understand.
The good thing is that you will be shocked at how quickly you can
heal and how much better you can feel when you can get lots of rest.
I have not looked back. I have busied myself with some volunteer
work that is within my current, reduced abilities. It is very
satisfying and fulfilling. The nice thing is that if I have planned
something but just am not well that day, I can cancel at a moment's
notice. You must choose your activities wisely - things where you
are not depended on for the project to work. For example, your
public library will welcome whatever help you can give but will not
have a problem if you can't show up for weeks at a time during a
flare. I also am part of a team that ministers to and mentors
teen aged girls who are wards of the state in a group home. If I
can't make it, the team can manage fine without me. Sometimes I
can't walk because of my feet, but my hands might be OK, so I can't
go visit the girls but I can type up material they will need to pass
out. Flexibility is the key.
Another thing is that you will be forced to acknowledge that you are
NOT your work. This is true of everyone, but most of us miss this
truth while we are working. We tend to define ourselves and our worth
by our work-for-pay. But this is a sad mistake for all of us. Our
worth is based on our care for others, not on our ability to earn
money. This can be an added blessing in what is happening to you.
You will discover your REAL worth because this disease cannot stop
you from caring creatively for people around you.
I hope you will look at this as a new beginning. Yes, old things are
ending, but new things are just beginning!
best regards,
sherry z

Retiring on Disability due to PA-it was approved

2007-01-06 03:14:28

Hi folks a couple of months ago I had written about applying for long term
disability through my employer due to my PA.
Today I received word that it has been approved. I feel both blessed and sad.
Blessed that I can now relax and try and heal from the pain I am in.
Blessed that it all works out eventually.
Saddened because at age 50 I no longer have my beloved career. I worked
really hard to develop and maintain my career. Not only do I have PA but I
also became profoundly deaf when I was a teenager. I strove to prove I was
as I teasingly call myself "super crip" nothing can stop me ever. So, yes
finally I am ready to say that yep I am leaving the life I know and moving
into the unknown. Luckily I have a supportive partner and am financially
secure as well as my health insurance is also taken care of. So I am
blessed and saddened.
How have others dealt with leaving their careers? It is a scary thing.
Best,
Barbara

Re: MTX + Mobic

2007-01-05 23:19:08

No, MTX doesn't help OA. I have it with PsA too, and also fibromyalgia.
That's why I have to take so many meds to control pain (see my last post).
The Flexaril *really* helped me sleep for a couple of months, then it
stopped working so well. Then my rheumy added Ultram, which helps a
lot - at least when I didn't have it for two days I sure could tell - yowzah!
Julie C.

Re: [PsoriaticArthritis] New To Group

2007-01-05 22:42:29

Cindy, have you been checked for lupus? The pain sounds a lot like pain from
lupus.
Theresa

ringing in the ears- a side effect or part of PsA/Don

2007-01-05 10:12:08

Hi Don,
While I don't have tinnitus, a close friend of mine has it, and if you wanted
to communicate with a "veteran", I would be glad to ask him. He has had it for
years and years, and it is severe. He probably knows more about it than most
doctors. Though there is no drug for it, and "remedies" are not at all reliable,
he might have some suggestions for you. One for example, is joining a support
group. But he is also in touch with a fellow on the west coast who is I believe
the sort of national tinnitus-victims expert.
Let me know.
Don
Boston

Re: New To Group

2007-01-05 07:27:33

Hi Cindy,
Welcome, You certainly are busy and seem to be a fighter.
You mention your symptoms and and how you are affected, but are you
doing anything for treatment?? PA CAN be treated very successfully
by Methotrexate, Enbrel, Humira, just to name a few options.
If you are NOT treating your PA, you could be enabling permanent
joint damage by not addressing this. It's great that you aren't just
lying down and giving in, but you also need to take the offense and
deal with this disease.
Stay Well,
David

New To Group

2007-01-05 01:34:18

My name is Cindy Penkoff, I am 44 years old, the mother of an amazing 9 year old
son and the wife of a fabulously man that I have been privileged to be with for
nearly 22 years. I have two great dogs and a home that we love. I am a web
retailer and author of the book Girlfriend Generation. I have a very busy life.
I was diagnosed with psoriatic arthritis about 5 years ago. Although I have
lived with it for about 9 years. My psoriasis (the skin condition) flared up
visually for the first time when my son was about 2 months old. It wasn't a
small thing either. Out of the blue my hands were like "hamburger meat", as my
husband so nicely put it, and my face wasn't much better. I refused to leave the
house. It was not long after that that I started having joint pain, stiffness
and sore muscles. There are days when I can barely function, but, I try. Since
psoriatic arthritis doesn't only effect your joints, but your muscles and
internal organs, it confused many of my doctors as they were unfamiliar with the
disease. I have had just about every test under the sun, in an attempt to
diagnose my condition.
<DIV
entire mid-section and lasted about 30 minutes. When it was done I had to spend
2 days in bed, because I was so sore, and had pain that lasted in the area of my
kidneys, for 3 months. That pain comes back on and off and last several weeks
each time. I have been to all kinds of doctors to make sure that there is
nothing wrong with my kidneys and have been told no. It is your arthritis
attacking the muscles in that area. I have mixed feelings about that. The devil
know vs the devil unknown sort of thing.
Many days I get up in the morning and the heel of my foot hurts almost too much
to walk. Many days I feel like I got beat up. I get ear infections due to this
an my nails are effected in big ways. I have lost numerous toe nails and my
finger nails are extremely dry. Since appearance is very important to me, I have
my nails done every 2 weeks. I have found after years of searching, products
that I can use on my skin so that most people don't even know I have psoriasis.
I have also managed to avoid medication, for I know once I start, I will never
come off of them.
NO ONE knows I am sick unless I tell them. I like it that way. Today is one of
those days. I was on my feet all day yesterday outside, and today I am having a
difficult time functioning. EVERYTHING hurts.
The good news is, I still go out dancing with the girls, in 4 inch heels and go
about my life. I pay for it later, but, I refuse to give in. I can't yet. This
is my life.
I need to make it work.
Cindy Penkoff <girlfriendgeneration@...

Re: juicing

2007-01-04 13:51:13

Shelley - I eat mostly raw foods these days, fruits and veggies and
nuts with some whole grains, especially quinoa. I'm sorry to say
that it doesn't seem to really have improved my P or PA at all, but I
do feel it is a healthy way to eat in general and is helping me lose
weight slowly.
I would not advise getting heavily into juices. The problem with
juices is that you don't get the necessary fiber. The very thing you
hate, the texture, is