Daily Blog

Nobody - including my rheumy - has told me not to exercise. In fact, just the
opposite is true. I think your body will tell you what you can and cannot do.
If in doubt, go slowly and work up to the level you want to be at; but - if you
feel well enough - go for it. I'm 70 and go to the gym 4-5 times a week,
alternating between the fitness floor (treadmill, bike, elliptical and weight
training) and water aerobics. If I'm hurting, water is what I do because
there's virtually never any pain there and you can get a really good workout if
you join a class and learn some of the nifty moves that can help strengthen
virtually every part of your body. Not all instructors are created equal,
though. Some are much better than others.
Joanna Hoelscher
630-833-7361

Hi Beth,
First, congrats on the weight loss so far. Thanks for
the encouraging words. I'm 478 and definetly have
medical issues as well. My quality of life has not
been great when it comes to health and physical
issues. I have a wonderful husband and son that are
very supportive and encouraging. I have been looking
at the negatives immediately after the surgery and
stressing about breathing issues during the surgery.
My endocronologist has told me I will breathe better
during the surgery than I ever have. I know I have to
stay focused on why I decided to have the surgery and
look at the months and years afterward, but knowing
and doing are two different things. Thanks for the
suggestion about talking with PCP. I see her on the
17th so I'll talk with her then. Happy New Year and
Happy thinner year.
Gloria

Has anyone changed the type of mattress you use - from standard to
sleep number or foam? If so, what did you use and what did you change
to and has it made any difference in getting rest/pain relief?
Thanks.

My doc thinks I have ulcers. I wasn't even aware that this could be
a side effect. Please keep me in your prayers.
Kerri
9/29/04
RNY
370/290

P.S. Re: exercise, especially running. I feel obliged to add to my earlier
message that it IS true that people with any kind of arthritic knee problems
(even "just" osteo) are advised to keep running, even walking on a treadmill to
a minimum and opt for things like a bike or elliptical - because of the pounding
the knee takes when you run or even use the treadmill. Even if you don't feel
it at the time, it is having a negative impact on your joint. I was advised -
even after having a knee replacement - to avoid the treadmill for that reason;
so, while I still do it pretty regularly, I tend to do the typical 10/10/10 that
many do who work out in a gym, i.e. three different pieces of equipment for ten
minutes each; and I use the "hill" option on the treadmill instead of a really
fast speed.
Joanna Hoelscher
630-833-7361

Randi - it can take up to 12 weeks to notice improvement from MTX.
Also, the side effects do tend to lessen over time for most people.
Be patient and give it a little more time before jumping to another
drug. MTX is relatively safe and inexpensive. We only have a
handful of drugs to help us and each of them will eventually fail, so
the longer you can stay on each drug, the better.
Also, don't expect complete remission although it can happen. Most
of us, no matter what meds we are on, continue to have some pain
daily. And pain levels do constantly go up and down, even with
meds. I have what I consider good relief with Humira, but I am never
completely pain-free. Some days I'm limping due to foot/ankle pain.
I can't ever lift a cooking pot due to my wrists. Some days I can't
even lift a mug of coffee without wrist pain. It's different every
day, but it's NEVER so bad as it was before I started taking the
meds. I don't mean to be giving you a downer, but I do want you to
have realistic expectations. It should get lots better, just be
patient.
regards,
sherry z

Ranci
I have been on the MTX for about the same amount of time. It takes a while to
get the full effect from the drug. I am just now beginning to feel a difference
in my pain level.
My Rheumy reminded me that the MTX is not a pain management drug. It is used to
slow down or stop the progression of joint distruction. It does offer something
in the area of pain relief as it does have anitinflamitory properties. When you
reduce the inflamation you reduce the pain. I take Ibuprofen in addition to the
MTX.
Nancy

I don't have a diagram but I can tell you what mine looks like. My surgeon tried
lappy...so I have 2 1" incision marks on each side of my upper stomach and one
lower. He couldn't do it that way because of scar tissue and such from previous
surgeries. So he opened me... from just about the vagina up to my sternum...I
had a hysterectomy in '99 and he basically floowed the same incision line as
that was just had to go higher with it. I had mine done 12/3/04 and I am almost
completely closed/healed shut. Hope this helps you.
Mary open rny 12/3/04
370/320/.....
RSullivan <rsullivan10@...
Does anyone have a handy website for diagrams of what the incisions look
like for each surgery? I keep seeing "open" but the only one I've been
able to get a good diagram of is the lap procedure.

Hey Pat, first of all, congrats on getting under 200!! I am keeping
that on my list of priorities!!! Now, who would've thought of the
problems we'd have from getting skinny!! haha. But I know what you
mean. My knees have started to do that too and I have been putting a
pillow between my legs before I fall asleep. Of course, I toss and
turn like crazy so it usually falls out but it helps me get a few
hours of sleep. Good luck to you!!
Tina
open rny 7-6-04
319-205-159

Hi Lilly,
You have joined a great group of supportive and encouraging people here.
They have all become a part of my extended family. I will keep you in my
thoughts and prayers for an uneventful surgery and easy recovery. Are you
having
LAP or open and where you from? I was in the hospital for three days for my
open back in April. The most important thing for you to take to the hospital
I think is chapstick...lol. I took a book, crossword puzzle book and didn't
touch either one....lol. I wore loose fitting clothes and slip on shoes and
wore the same outfit home minus the bra. It was easier wearing the hospital
gown due to the IV's. You might want to take footies and some personal
items but if your hospital is anything like mine everything was provided from
toothpaste to shampoo for that wonderful shower I was allowed to take the day I
went home...lol. Wishing you lots of luck. Please keep us posted and feel
free to ask any questions, one of us is bound to have gone through it. Take
care and God bless.
Hugs,
Laurette
4/23/04 open rny
309/290/213/160
St. Vincent Charity
Cleveland, Ohio

Lilly,
Good luck tomorrow. Nothing like starting the New Year out right. I
took an overnight bag to the hospital for the four days I was there
and the only thing I used was my toothbrush, toothpaste and my
nightgown. I opened it up and used it in the back for a robe since
my hospital did not have the "big" gowns to cover all of me. I took
a magazine and a book and never opened them. I was too busy resting,
napping and sleeping...haha. Best wishes to you tomorrow!! I am a
few days shy of my 6 months and I am feeling wonderful!! I had some
complications at first but I never regret having the surgery!!
Tina
open rny 7-6-04
319-205-159

We used to live in Clearwater. My daughter still lives in New Port Ritchie. We
moved back up to Connecticut about a year and a half ago. My daughter said she
wanted to take care of us. That did not work out because her youngest son
resented us being there so we got an apartment on our own. Thank you for caring
and we wish you well
Walt

Hi, I am new to this group.I really never have joined any
groups ...Until today.I will be having surgery TOMORROW! Jan.03,2005
I hope to be starting the new year losing weight.I am nervous about
tomorrow morning.i have started drinking the nasty cocktail to clean
my stomach out.Gross!Gross!I have no clue as what to really pack in
my suitcase,any sugesstions anyone?I was told the stay would be
about5 days.I would love to hear from some of you before tomorrow.I
will be back online soon after I get home.Please keep me in your
prayers.Thanks Lilly

Does anyone have a handy website for diagrams of what the incisions look
like for each surgery? I keep seeing "open" but the only one I've been
able to get a good diagram of is the lap procedure.

* S. Zorzi:
A primary immune disorder is one that you are more than likely born with
and not acquired like HIV.
I have a very low IgG,Ig1 and Ig3, because of this i cannot fight
infections and get infections very quickly. by quickly I mean...I could
be fine at 10AM and be very very sick with an infection at 10PM. I
usually avoid crowds say as in the movies,the mall and i usually get
sick when I fly...I constantly wash my hands.
The low Ig3 means that i usually get sinus infections and upper
respiratory infections,which is not good in itself but i moderate asthma
and everything goes right to my chest.
I had to go from a social butterfly and professional person to still a
social butterfly but more by phone and internet...LOL I had to stop
working as i was sick allot. In fact I have been sick with either a
sinus infection or the flu since 10/07.
Then was diagnosed with the PA a little over a year ago...just one more
to the pile.
--
peace,
tish

I have been on Arava for about four years. There have been no discernable side
affects except for slight constipation when I first went on it. For me it has
been a miracle drug. I have had excellent results. Swelling is down and damage
to joints?see to have slowed to a minimum.
Good Luck? with it.
Walt?

It took them 4 years and 6 different doctors to correctly diagnose PA. the
problem is that it is not common and even most rheumys do not see that much of
it. Decide which one you trust and have them take some tests. Continue taking
your meds. Good Luck
Walt

Hi Angelia,
It's nice to hear from you and also nice to know that we have a veteran
around to answer all our questions we may have. Thanks for popping your
head out and saying hey.
Lynn H. my personal email lharper@...
My Groups:

I have been lurking for a while. I have been on 20mg of MTX for 6
weeks, and am due to see my doc next Wednesday.
The problem I am having is that my pain levels are not improving. They
almost appear to be getting worse. I take 4 tabs before bed on Tuesday
and the remaining 4 tabs on Wednesday morning. I suffer for two days
with fatigue and an upset stomach.
It is so frustrating because I have spent most of my life super morbidly
obese and now that I am thin, I still can't be as active as I want to
be. I walk and keep moving because it seems to help with the stiffness
in the knees, but my hands are another story. They hurt no matter what
I do. I used to groom my own dogs, but now I have to take my big dog to
be groomed because he is too big of a job for me.
I am concerned that I am not going to get any better. The doctor is
talking about putting me on Enbril or Humara. I am going to see about
Arava because it is less expensive, but I afraid of the side effects.
Thank you for listening,
Randi in AZ

Jacksonville, FL
Dr. Cecilia Olazar
Definately, My mom and I both love her.

Hi all! I haven't posted in a while, but I have been keeping up on my reading.
I made this great chicken recipe the other night I just have to share!
Ingredients:
4 - 6 boneless skinless chicken breast or chicken thighs
1 package frozen chopped spinach
1 small red onion
a few mushrooms
1 lemon
garlic
salt & pepper
olive oil
Directions:
Pound the chicken until it is nice and thin. To make the stuffing put a little
bit of olive oil in the pan add the onion, garlic, salt and pepper. Cook until
onions are a little bit carmalized. Add the mushrooms and cook for another
minute or two. Microwave the spinach until it is defrosted and then squeeze out
the extra water. Add the spinach to the rest of the stuffing. Put about 2 tbsp
of the filling in each chicken breast. Roll and secure with toothpicks. Put a
little bit of olive oil in a pan. Sear the outside of the chicken rolls (high
heat to lock in juices) Transfer to a glass or metal pan and place in a 425
degree oven until the chicken is cooked. You can freeze these individually and
microwave them as needed. They are great!
Erica
lap 11/22/04
304/265/190

I have been in this group for over a month now. I have messaged a
few, and let then know my experiance. I have been quietly in the
background. I have read all the messages I have recieved, and
noticed that a lot of the members are pre-op our just having the
surgery. I just want you to know that if there is any information
that I can help answer I would gladly give it a good try. I am two
and a half years out. I was 300 pounds when I went into surgery, and
now I am stuck at 165. I dropped down to 145 and I looked and felt
like a skelton walking around. I to have problems with sugar, and
carbs. I can eat a very small meal. I drink one glass of an alcohol
casually on the weekends. A shot of alchohol makes me tippicy. My
friends call me a cheap date. I have one quiestion that maybe one of
you can help me with. I have been taking fish oil to help with
digestion, and I want to know if that is a bad thing for me. It has
helped me, but if it is damageing my stomach then I will stop.

Hi,
Yes, he is the physician on CHANNEL 7
He is wonderful and so his is associate. They do the Remicade in the office.
Doris

I started losing my hair at three months post-op, I am now almost 5
months post-op and my hair is growing back - straight, I use to have
a nice amount of natural curl now I think I look like a porcupine.
At first I thought it was my imagination but my hairdresser how has
had other by-pass patients was quite surprised. My hair use to be
straight but in my thirty's it started to curl. I hope this too
will pass. Oh yeah, I lost another 6 pounds and have now lost 60
pounds, so I guess I will get use to straight hair.
Pat in RI

Jackie,
No one with Pa is running.. OR not advised to.
Hope you find out what your problem is.
Mary

I would like to recommend my dermatologist DR. BETH DOLAN DALLAS TEXAS
Theresa

Sherry...Hi..
I did the exact same thing that you are doing.. I to am from NW Arkansas and
was also seeing a local surgeon when the program was shut down. I too then
made my appointment with Dr.Gorospe and Dr. Kirk. Let me say that they are
the most kind and caring people that you will ever meet. Along with the
kindness of the office staff I was made to feel very at ease. While I also
had most of the tests completed here I did have to redo some"but not all" of
the tests. I in addition had to see a pulminologist. It went very quickly
and I had approval in no time. I then had surgery within 3 weeks after the
insurance approval. The WLS was done on July 13,2004 and as of the morning I
have lost 128 pounds. My wife says that the program shutdown here was done
by the grace of our Lord. She believes that He guided us to Dr.Gorospe and
his staff because of his skills and such wonderful support that we have
received. I have not had any complications and except for a dumping episode
or two I think I have been granted a miracle. Southcrest Hospital is where I
had the WLS and the nursing staff there were awesome. The hospital has a
whole floor dedicated to WLS in every aspect. From the beds to the chairs
and to the special needs a person of FULL figure may need they met. I was
very happy with my experince there. I hope some of this will make you feel
at ease at least a little. I will keep you in my prayers and hopefully will
see you at our local support group.I attend every month so look for
me..Really you can't miss me...LOL My name is Marshall so say hi when you
can..
Stone and Sea are deep in life;
Two unalterable symbols of the world;
Permanence at rest and permanence in motion;
Participants in the Power that remains.

Dear Walt,
We do have a lot in common, except Im 52 and everyone tells me Im too
young to be this sick. That doesnt make any difference as far as Im
concerned except make it me feel like its my fault somehow.
I have COPD as well, but mine is due to chronic asthma Ive had since I was
a child. We just dont have strong lungs in my family. I use all sorts of
breathing sprays and Im supposed to be on oxygen at night, but only use it
about 50% of the time. Sometimes Im just too exhausted to hook it up at
night. Im also supposed to use a machine for sleep apnea, but that is
almost impossible due to my skin burning so much when I sleep. Anything
plastic on my face just makes it worse.
Like you Im not giving up, but there are times when it doesnt seem worth
the struggle. I keep trying though to find reasons to keep going on and
always come back to my family. The only problem is if Im not seeing them
very often, my girls both live an hour and 2 hours away from home, then I
tend to wonder why Im fighting so hard. Its so strange because I raised
them both to be very independent, and now I miss them too much. Of course,
I think I still did the right thing on raising them, but its harder on me
now since Im alone so much. Most of my close friends all are in Indiana or
have passed away. Ive met some wonderful people though through this site
and another PA site and we are as close as you can get being Internet
friends. We all suffer together and it makes it easier to know you arent
alone even at 4AM.
I live in Port Richey, Florida, which is about an hour north of Tampa on the
gulf side. I grew up in Naples Florida, spending all our vacations and
summers there. We lived there for several years and then opened our
business up here about 12 years ago. So i know the gulf side pretty well
and have only vacationed to the East side. Where are you and do you think
the weather is helping you? I know the extremes both ways can be rough. I
hate the summers here, but my erythromelalgia makes anything too hot and the
summers are miserable for me. I rarely go out at all and then its only
from one air-conditioned place to another.
I hope you can get some sleep and are doing better pain wise. Maybe it
would help your wife to read some of the messages on this site and it might
help her realize just how bad the pain can be for some of us. Just a
thought. Take care, Fran

Yes, sugar is sugar.........and the sugar from fruit can be just as bad, make
you just as sick as the kind from the bag for a gastric bypass patient. This
will not hold true for every person however - as if you read this list, what one
person can tolerate another cannot, and also over time, you will be able to have
things that you cannot tolerate at present. Hope this helps!
Pat
Brick, NJ

My surgeon told me it was okay to have a glass of wine and encouraged me to do
so about once a week. Last night i finally got up the courage to do this and i
was completly sick to my stomach. I looked at each wine i choose and was
careful not to get any that had added sugar.... just natural sugar from the
fruit, could this natural sugar have made me sick or is it just the alcohol in
general?
Denise

I had a 2nd opinion with a new Rheumy yesterday. I was all pumped up
with a log of my aches and pains and a list of questions. Now, I'm
confused. He said he's not sure that I have PsA and doesn't think I
have Fibromyalgia. He said I could stop taking sulfasalazine 'If I
want to' and told me to go see a Dermatologist to determine if I have
Psorisis or Seboric Dermatitis. He wants me back in 6 weeks.
Once again I'm wondering if I'm crazy or didn't communicate properly
with the Dr. I was so shocked that I didn't ask the most obvious
question, "If it's not PsA or Fibro, what the heck is it?"
So do I call the Doc back and ask? I feel so stupid for not asking
in the first place and he didn't say either.
And should I stop taking the medicine? I take 1000mg 2x per day.
I'm not sure if it does anything. My symptoms in my hands/wrists are
somewhat better since I've been taking it starting September. My
hands get fatigued less and some pains have gone away but I have more
pains in my wrists, knees and elbows since I started the med.
Thanks for listening,
Harry

Rae,
Thanks for the input. Yes it does help. It does get a little
confusing sometimes. I was dx by Dr Fye at UC San Francisco. He dx
cases that regular Rhumatologists have trouble with.
I am in Santa Cruz CA now, and I am seeing Dr Ramanugan who is a
Rhumatologist also. She seems a bit unsure of herself, and thinks I
have a combination of Oseto and Psoriatic arthritis. The Psoriatic
Mutalans in my foot has been very distructive, and has caused the
bones to thin and break. The navicular bone in my rt foot crumbled
into pieces, and the bones thined in the entire foot leading to 2
more fractures in the metatarsal bones. I am up walking again with a
Arizona Brace, but can't walk very far without pain. I am a nurse,
and I was working when the metarsals fractured. I kept on working in
a Pediatric Clinic with a Roller Aide. It looks like a scooter, but
has a small seat to put your knee on, while you push with your good
leg. It was a struggle, but I was determined. The kids in the clinic
got a kick out of it and wanted to ride it.
I am rambling. This site it helpful, and it feels good to communicate
with others going through similar circumstances.
Thanks, Julie

Don't know if any of you remember me or not. I began this process in
July and have spoken with a doctor in Northwest Arkansas. Then I
heard some pretty scary rumors about the doctor and have since
changed my mind about using him (from the advice of many of you). I
have made an appointment with Dr. Gorospe in Tulsa for January 21,
will be there for 5-6 hours. I am looking forward to meeting with
him. The daugher of one of the ladies I work with had surgery on
December 22 or 23. She is doing fine (already lost 13 pounds in the
first week per her mom) and highly recommended that I make an
appointment with him. My previous doctor has not done very many of
the sugeries and the program is currently "shut down for fine-
tuning". Whatever that might mean? And from what I have researched
about Dr. Gorospe he has done numberous surgeries, was the first
surgeon to do gastric bypass in Oklahoma and has had great sucess
with the program. I asked his nurse if I would have to redo some of
the pre-testing that I have already done, the psych eval and stomach
scope (whatever it's called). She said that Dr. Gorospe likes all of
the pre-testing done within the 30 days from the first appointment
and surgery date. I couldn't believe what I had heard, I asked her
if I had heard her correctly. If all goes as planned I will be
having surgery sometime at the end of Febuary or early March. I am
so in hopes that it will in fact go that quickly.
Sherry

Jackie,
I have been taking MTX for three months. I have had no ill affects from it. I am
up to 7 tabs (.25 tabs) each week. I had asked my Rheumy about having the
occasional wine or coctail and he said that it was ok as long as I did not have
any on the day that I take my medication and that I not get "hammered".
I did get "the shoe" lecture. He strongly suggested that I trade in my cute
shoes for something more substantial. I have to admit I do have a bit of a
problem with my feet some days, and they do feel better when I wear my big old
walking shoes.
The only other restrictions he has given, were to advise him if I were going to
have any treatment with antibiotics. Apparently you have to stop taking the MXT
while on them. The only other medication take is ibuprofin, which while some
pharmacies would flag as a possible interaction, he says is widly used while
taking MXT. He is not terribly concerned feeling that the benefit outweighs the
risk. I do have labs done every monts and so far everything is good and my sed
rate has gone down considerably meaning there is less inflamation than before
starting the MXT
I have had no hair loss. It is still nice and shiny and I keep it colored and
trimmed as usual. I try to live as normally with this as possible, getting lots
of rest, eating well, and doing what exercise I can.
Hang in there
Nancy

I am in Camden, Arkansas and the only store here that sales stuff like that is
Wal Mart. I found the other sugar free mixes so i picked up some peach and
raspberry
anna_coen <anna_coen@...
Have you tried like a CVS or other drug store. I found the crystal
light on the go pouches at Walgreens. Where do you live?
ANna

Hi,
Can you tell me what side effects you had on Arava? I was just placed
on it this week.
Thanks
Pam
Alabama

Gloria
Congrats on getting your surgery date and approval. you will be in my thoughs
and prayers when you get your surgery. your getting surgery on my daughter's
birthday... I can't wait to get my surgery the surgon wants me to lose 20lbs
first....
Love Debbie

Hi Jackie,
I was just diagnosed last month and put on MTX. I was taken off within
a week due to the extreme reactions I had to the drug.
I am now on Arava and have been for about a week. So far, I have not
noticed any side effects.
Pam
Alabama

Hi All,
I haven't been on for quite a while. Actually since
late September. My job was very busy and just didn't
have time.
Anyway, since September, I have met with surgeon and
even though he told me surgery would be denied first
time by insurance it wasn't. As a matter of fact it
was approved in less than a week. So I am scheduled
for January 27th at Washington Hospital Center in
Washington, DC. I did lots of research this summer
and read lots of books and alot of your e-mails.
Now that it is definitely happening I am experiencing
anxiety about other issues I have and can't seem to
get my focus off of them.
I am having nasal problems. Yes I have sleep apnea
but am on a bi-pap machine. But I have had a lot of
nasal congestion when I go to sleep and can't breathe.
If I use Vicks Sinex I can. I unfortunately have
become addicted to breathing and Sinex because it
works immediately. My doctor has prescribed Nasonex
and that is helping with the problems caused by
extended use of Sinex but it is not helping with
nighttime problem.
Anyway, I'm stressing over that and the problems
afterward. I'm stressing over things like my period.
I just started so that means I will start a few days
after my surgery - yuk! These are just a few.
I was very certain about the surgery before hand but
now I keep thinking - I need to get some of these
other things taken care of first. But than I think
they will start improving after I have lost some of
the weight. Has anyone else experienced any of this?
Feeling scared, anxious and wondering if I have made
the right decision.
Gloria

area: Dayton, Ohio
physician: Dr. Ranginwala
recommendation: yes
Rachel Engle

regular water bothers me also but i can drink propel without a problem it seems
to be smoother
try it and see
take care
shirley of fontana socal
Michelle D Pearson <decemberfemale66@...
what do any of you do about water intake. when water makes you very sick.

Hey Dora,
Glad to hear from you also! Gosh time seemed to speed up except on
our drive back from TX. Then it just crawled...LOL!!! Yes I now
get to start packing more things up for our move...next month! Gosh
I was ready to get sprung from here this month but the company Don
will work for had their current contract extended a month so now we
have to wait. But time will fly I hope...LOL!!! Put Buddy in our
Vet's Kennel while we were gone and they put him on a diet. Was 65
pounds and now I think alot less. Guess it was my extra's I was
giving him that made him gain so much weight...LOL!!! Hope your
having a great New Years Day!
Hugs, Linda

Thanks Kim!! I am alway's trying to keep my son from feeling any
pain I've in the past but he's so hard headed this time. I was that
age also when I became pregnant with Robert but that relationship
didn't make it down the aisle...he was already married I found out
three weeks prior to when we were suppose to get married. Oh I'd
give out his email address to anyone who would like to take a try at
putting some sense into his hard head...LOL!!! Thanks for writing
and I hope you had a wonderful holiday.
Hugs, Linda

Hey Pat,
Happy New Years!! I am so glad to be back home, ready to continue
packing our stuff and staying happy. Glad to hear you all took care
of Denise. I had tried plenty but was in "dead" spots and couldn't
call out on the cell. BTW, this future DIL is a rebound case.
Robert had split up with his prior girlfriend of 3 yrs in July and
met back up with this one in August! UGH....!!!! My Dad was a
sailor too and I just wish he's send some knowledge to Robert from
up above!!! Don't get me wrong...I know some can handle it but he's
getting ready to be out on a ship for 9 month's at a time, stationed
in Japan and she can't go! So why not wait?? Geeze....!!! I need
a drink...LOL!!! I pray our Ms Brooke is doing well and not in too
much pain. She's waited so many bloomin' day's for this to happen
for her. She told me prior to me leaving that her kids and I think
a sister or two would be there for her during and afterwards. Her
daughter is going to be a big help to her.
Hugs, Linda

Hey James,
Maybe next time we are out your way we can all get together. After
we move back to TX next month we are going to be making more trips
out your way. I remember seeing Temecula along the way also. Don's
brother just moved to Hesperia with his family from Long Beach area
and had a much bigger home than the other 7 siblings so it was nice
to be there. Wanted to go up Big Bear but didn't have time to
afterall. Maybe next time...LOL!!! Robert took us to Old Town and
I loved it there...have you been? Even took in some ice skating
while there at Horton Plaza. Haven't done that in a coon's age
either...LOL!!! Well I pray your having a great New Years Day! We
just got back from seeing "Ocean's 12"!
Hugs, Linda in AL.

I just found and joined this group. I was motivated to look for
answers because my rheum just told me I needed to be on MTX. I was
diagnosed in 2000 in my early 50s and have previously been on Medrol
and Enbrel.
I had to stop Enbrel two years ago because I got sick so much. Since
then, I've been "managing" my flares with Medrol. I'm between flares
right now an free of all but an occasional dose of ibuprofen.
My rheum has told me that using Medrol repetitively is a poor
option, with more complications than MTX. He thinks that, when I flare
again, I should start MTX. However I am afraid of the
MTX complications and how it would change my lifestyle - no more wine
with dinner, hair loss, fatigue, nausea, etc.
I would be interesting in hearing from people taking, or who have
taken, MTX and am particularly interested to know if Arava is a better
option.
Thanks - it's such a relief to know about this group!
Jackie

Yeah mine too...I hate the boney knee feeling but you know what I wouldnt give
it up for anything...
Hugs
Kim Graby
anna_coen <anna_coen@...
Kim, Thanks very much. I've been noticing the whole padding thing.
The inside of my knees are bruised too. For the first time in
several years, they actually touch!
anna

Tish, I'm so sorry to hear that you are suffering so much! What is a
primary immune disorder?
Warmest regards,
sherry z

I was a 26 before my surgery and the day of...I loved the feeling of bring
clothes home and having to return them. My hubby always would get on to me about
trying them on at the store but I couldnt do it because for some many years I
would get so upset cause things would not fit, I shocked him when I tried these
Jeans on and they fit....but I am only 5'2 and a very petite person...
You will get there very soon...and your doing a great job....Happy New Year to
you also...
Hugs
Kim Graby
Babydollbbw3@... wrote:
Kim,
Have a wonderful New Years and see you back here next year. Congrats on the
new jeans too...LOL What a wonderful feeling. I bought jeans the other day
thinking that 22's would be perfect, had to take them back and get 20's. Now
for me that's something since I was wearing 26/28's prior to surgery. Everyone
have a blessed and safe New Years. May all our wishes come true in the new
year.
Hugs,
Laurette
4/23/04 open rny
309/290/213/160
St. Vincent Charity
Cleveland, Ohio

There's also the old joke about dermatologists: It's a great field in which
to practice medicine because patients never get better and never die.
Regards,
BeingIrish

Yeah I cant belive how many cute clothes there is in those sizes and they are
cheaper....and you will get yours...stay postive....
Hugs
Kim Graby
RSullivan <rsullivan10@...
Well my daughter just cleaned out her closet and she had a bunch of 12
and 14 in girls - I told her to bag them and put them in the closet.
She has such cute things - if I EVER get the surgery and get to that
size, I want those clothes!!! :-)

I just joined as well. I was interested to read you email, as my
chiropractors have been urging me to get off wheat and dairy - but
they say that to everyone, so who knows? Also, I agree that exercise
is key. Currently I am training for a half marathon - it's amazing that
running actually reduces my pain load! Finally, I have found that a
skillful 90 minute massage followed by two 5-10 minute sessions in the
steam
room with a 5 minute interval in between can often leave me COMPLETELY
free of pain for almost a day. I
have done this procedure in the late afternoon or early evening and
wake up without
pain. It's amazing! However, it's hard for me to find the combo of
massage therapist plus steam room in the same place.
Jackie

You GO Girl!!!!!!!!!!!!! I have to make sure I have a Blanket I put between my
knees....Its works some days and others it doesnt ....Sorry cant give you more
advice on this...But congrats on seeing the below 200 mark
Hugs
Kim Graby
Pat <patcole@...
As of today I am under 200 pounds! 199.5 to be exact! That is 54
pounds gone forever. Now my problem - I have very skinny legs, I
carried all my weight in my stomach, my knees are bony and if I
sleep on my side my knees touch and the bones rubbing together wake
me up! I was thinking of using an old rubber neck collar and wrap
it around my knee to pad them, what does everyone else do?
Pat in RI
253/199.5/140 (or whenever the weight stops coming off)

I have a friend who has had lupus for 7 or 8 years. She did not respond well to
other meds and her doctor put her on Plaquenil and it has worked beautifully
every since. You would never know anything is wrong with her. She did have to
cut back on her dosage for a little while last year because of her liver tests
but I think she was able to eventually up them. During the lowered dosage time,
she felt a little sore in the evenings but nothing major.
Joanna Hoelscher
630-833-7361

I saw those too and picked some up in lemonade. It will definitely help
me at work!
Susan

Had to post this got it from another group I am in.
To leave the old with a burst of song;
To recall the right and forgive the wrong;
To forget the things that bind you fast
To the vain regrets of the year that's past;
To have the strength to let go your hold
Of the not worth while of the days grown old;
To dare go forth with a purpose true,
To the unknown task of the year that's new;
To help your brother along the road,
To do his work and lift his load;
To add your gift to the world's good cheer,
Is to have and to give a Happy New Year.

Just to clarify - HLA-B27 is not the only genetic marker linked to
PA. I myself am negative for HLA-B27 but definitely have PA. There
are more than 30 different genetic markers linked to PA. The only
one they usually test for is HLA-B27 because it is closely linked to
ankylosing spondylitis which affects the spine. They test for this
because they will treat more aggressively from the very beginning if
you have this marker. But many of us don't have this marker at all.
(This is my understanding from my reading - I am not a medical
professional!)
Still, as Bob says, it is always genetic even though we usually don't
go to the expense of figuring out which gene marker(s) we have.
best to all,
sherry z
\

Hey guys,
I just found something very cool at Wal-Mart. They have their brand of crystal
light in lemonade, raspberry ice and peach tea. They now have it in individual
servings. They are in these little tubes and I think they come 10 to a pack.
You can dump one tube of it into your bottled water and make your own ready to
carry crystal light. I use a lot of bottled water and can put these in my purse
or in my desk at work and make some crystal light whenever I want them. Just
thought I would share.
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-375-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

Hi Janet,
I am sorry you had a bad experience with Dr. Fernando, but I am not
surprised. In my opinion (and my opinion only, not the opinion of this
board), I
believe that she didn't properly monitor me for side effects when I was on
Arava. If you want more details, you can email me off list. I now have Dr.
Miller-Blair in South Sacto and I like her a lot. Since I have been diagnosed
with both RA and PA for 25 years, I've had several rheumatologists and am quite
well versed in what constitutes good care. She would be a good one to
connect with for another opinion.
Actually, the best Kaiser rheumatologist, IMHO, is Dr. Aileen Dillon in San
Francisco, my rheumatologist and pcp for several years. She interned at the
Mayo Clinic and has a wonderful reputation. The only problem is that in
addition to being a rheumatologist, she is also a pcp and that means that it's
very
difficult to get an appointment with her. A physical therapist once told me
that the entire Kaiser medical community in San Francisco -- all the doctors
and nurses, etc. -- want Dr. Dillon as their personal pcp. If you can manage
to see her and get another opinion about your condition, you will have struck
gold.
Good luck to you.
Regards,
BeingIrish

You are not obligated to reveal anything to your new employer unless they need
to make special work arrangements as far as access to the building or special
equipment. I wouldn't say anything and just keep it to yourself until the need
arrises.
Celeste

Vivian,
I agree completely. I think that was the key to my success in the hospital and
after I came home. I knew exactly what I was getting into and what would be
required of me. My husband still tells people about the dietician coming in my
room in the hospital. She was wanting to give me instructions on what I would
need to do with my diet after I got home. I could tell that she was an intern
because the regular dietician came in with her but let her do the talking. He
laughs because I knew more about it than she did. She would stutter and stammer
trying to remember what it was that she was supposed to tell me, and I would
tell her what she was trying to remember. He thought it was hilarious that I
knew more than she seemed to.
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-375-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

Linda,
So glad to see you are home and well. Sounds like you had a wonderful time.
Now to start preparing for the move :) I missed you. Glad to hear from you.
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-375-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

Debbie,
I did not, but I have heard of others having to have one done. Good luck. I am
sure it is nothing to worry about. If you can do the sleep apena test you can
do anything I am sure.
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-375-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

Area: Bay Area (Union City) CA
Kaiser
Rheumatologist: Dr. William-Smith
Recommended so far but just started with her. Great about answering
questions via email, even on weekends. Has been very supportive.

Hi Cheryl,
I'm glad you are reading Teitelbaum. I have read From F To F, and it's a fine
book, all the more plausible because, as you note, he had FM as a med student.
I've heard him interviewed on a medical radio show in NYC, hosted by Dr. Ronald
Hoffman, called HealthTalk. He's a very straight-forward physician, very
practical, and down to earth. If a caller calls Hoffman with a question on
fibro, he'll often mention Dr. T.
I have a lot of respect for Hoffman, and Hoffman's got a great deal of respect
for Jacob T.
Hoffman's website contains podcasts of many of his radio programs, some of
which involve guests, like him. You might be able to pull one up of their
discussion.
I believe their e-mail is radiopprogram @WOR.com. His gatekeeper is "Laurie"
and she will respond if asked. You could ask if she could identify any podcast
where Teitelbaum was Hoffman's guest. If not, might there be a transcript of the
interview?
Best of luck.
Don
Boston

I am currently looking for work. What should I tell my new employers?
Are there some sort of forms I should fill out since this is
considered a disability?

I know my sister with the pinched nerve will never "get it" That is
just how she is. So I am just not even going to worry about her. I
will just ignore her in relation to the PA. One other sister gets it
right off but she has always been the most compassionate of the
siblings. So I have one sister and two brothers that I am not sure
how much they understand. I spent 90% of yesterday asleep in bed and
feel better today so the rest does help. Having talked to my Mother
and getting her to understand was a HUGE step. And I feel much more
optimistic about things now that she seems to understand.

Glad you had a good trip If I had know you were going to be ib san
diego i would have offerd you and your hubby lunch when you pasted
through by my place, I live 5 min off I-15 in temecula. You went
right through it both to and from san diego from the high dessert,
thats what we call it up where Hespirea is Oh well maybe next time.
Would always to meet a family member. HAPPY NEW YEAR to you and
yours.

Yeah I could do the crystal light, but only walmart sells it here and I ask the
lady when will they get any more back in and she said it is only a season
product so they only order it during the summer.
anna_coen <anna_coen@...
Try taking smaller sips and sipping slower. A few people in my
group couldn't tolerate water. They tried making it ice cold and
that worked for some. Also, try crystal light. That may help.
Just a suggestion!
Anna

My surgeon also had me take the Pepcid Ac too for the first two
months. It did help. I wouldn't take them some days and I'd be in
a world of hurt and it'd go away when I finally did take them!
Anna

Try taking smaller sips and sipping slower. A few people in my
group couldn't tolerate water. They tried making it ice cold and
that worked for some. Also, try crystal light. That may help.
Just a suggestion!
Anna