Scared

December 9, 2002

Hi! I'm very sorry to hear you are having a bad time right now!

Chronic pain causes depression, I went through that myself. My

rheumy told me that it will only amplify the pain. I would not take

anti-depressants as I did not feel that had anything to do with my

pain, if I had it to do over I would have! My pain also interfeard

with getting restful sleep and only served to make the whole cycle

more visious. I thought that one was off too but it wasn't. You have

to go to a rheumy. I know you said your work hours doesn't work

well, but you could end up off work if it carries on, I ended up on

medical leave for two months and having to change jobs as they would

not release me. My job was a very physical job so don't let that

scare you. I would make an appointment towards the end of your work

day(1st shift) or at the very beginning of the day (2nd shift) that

way you don't miss the entire day's pay and your employer should be

satisfied. By the way I don't drink very much water either, mostly

soda all day every day. I have cut back on the soda as I am pregnant

and I've noticed no difference. Try to be patient with your partner,

he probably don't fully understand what's happening to you. My

husband was not very supportive at first, he just did not get it.

Also I think part of it was that he couldn't fix it so it only

served to frustrate him more. Explain to him that your immune system

is attacking you, and under good circumstances that will make you

feel like you have the flu, tired & achey. With it attacking your

joints it gives you alot of pain to go along with it. You sound like

you, I did a few months ago. Don't be scared, try to focus on

getting yourself the best possible care. When I finally got to a

rheumy I did not believe anything would help, but was desparate

enough to try anything. I had been taking bextra ( same drug group

as vioxx)and had a steriod shot with little relief. He doubled my

dose of that and added flexeril to help with muscle pain and make me

sleep more sound. I did not think that sleeping was my problem other

than that was all I wanted to do. It worked. I spent the better part

of 3 days sleeping. My pain started to improve, as my pain improved

so did my mood, as both improved I started feeling much better. This

may not work for you, but I can tell you there is more to treating

this than vioxx and it can get better! I hope thing get better for

you soon!Sorry so long!

--Merribeth

December 9, 2002

-

GET THEE TO A RHEUMY!! Here's a tip. Your sed rate is elevated- so

use that to your advantage. Have your PCP call local rheumy's to get

you in- be sure to tell them that your sed rate is elevated, that

worked for me. If your PCP refuses- either get a new PCP- or call

rheumy offices yourself pretending to be with your PCP (I work in a

hospital and we get calls from PCP's all the time and there's no

special " code " or anything!)

Remember- if you're only treating pain- you're fighting an uphill

battle- this is a DISEASE that must be treated. I know what you mean

about the lack of sympathy and understanding. Even though my family

and loved ones have been pretty great... I was still " relieved " when

my knees swelled up and the MD aspirated 300cc's of fluid out of them

because it was something TANGIBLE, it was PROOF that I was in

exceptional pain. I don't think others realize how brave and

courageous we have to be just to get out of bed in the morning.

Here's a thought, put a sharp rock in your partners shoe- right under

the heel- and then have him do the grocery shopping, cleaning,

toddler chasing, get up and down to go the bathroom 100 times because

of all the water, etc., etc. Okay, that was mean... but I really

don't think others have any idea.

This is getting really long and preachy... but I'll leave you with

one more thought... God loves you and that's alot!

Hold on to the fact that as much as you love your little one- a force

mightier than your pain loves you- and is hurting with you.

Things might not be better tomorrow or the next day- but they WILL be

better! You WILL get the help you need- and probably learn some

really great stuff along the way that will make you, and your child,

better people for it.

Kirsten

> Hello,

>

> It's been a really long time since I posted here.. wallowing in

self

> pity I'm sure. I am hurting more and more each day and I'm so

> frightened. I am taking 50 mg of vioxx a day and my pcp is at the

> end of his rope with meds he feels comfy prescribing, and finding a

> rheumy is hard due to my work hours etc. I know it's getting worse

> because on baseline blood tests nothing came up, now my sed rate

and

> wbc count is elevated. All my partner says is " drink more water,

and

> move around " he blames me for my pain and can't understand why my

> vioxx and sleeping the pain off is my only option at times. He's

> right about my not drinking water, I don't drink water at all...

soda

> all day actually. I can't even take care of my toddler today. I'm

> getting more and more depressed, to the point of just really hating

> my life and wanting to just hide in bed all the time. I feel I'm

> losing the fight, losing the energy to fight =( Sorry to dump on

you

> all, especially after lurking for so long. You are the only ones

who

> understand.

>

December 12, 2002

Actually, water might not be the best thing for you. It flushes all the

oils out of your system. Pop is definitely not the answer either. Try

snacking on baby carrots or cucumber slices. They replenish your fluids

while supplying nutrients. Try Yoga. It actually helps with stiffness and

the exercise gives you more energy. I'm so sorry for what you are going

through.

Ks Di

[ ] scared

> Hello,

>

> It's been a really long time since I posted here.. wallowing in self

> pity I'm sure. I am hurting more and more each day and I'm so

> frightened. I am taking 50 mg of vioxx a day and my pcp is at the

> end of his rope with meds he feels comfy prescribing, and finding a

> rheumy is hard due to my work hours etc. I know it's getting worse

> because on baseline blood tests nothing came up, now my sed rate and

> wbc count is elevated. All my partner says is " drink more water, and

> move around " he blames me for my pain and can't understand why my

> vioxx and sleeping the pain off is my only option at times. He's

> right about my not drinking water, I don't drink water at all... soda

> all day actually. I can't even take care of my toddler today. I'm

> getting more and more depressed, to the point of just really hating

> my life and wanting to just hide in bed all the time. I feel I'm

> losing the fight, losing the energy to fight =( Sorry to dump on you

> all, especially after lurking for so long. You are the only ones who

> understand.

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

December 16, 2002

Hi Again Shane,

There is no guarantee with or without drugs that deformities will/won't happen.

I have spoken to people who have had this disease for 10+ years with only

swelling... no deformities. BUT... I have also talked to people who have had it

<5 some inflammation remission attempts joints. keep place eastern myself. they

before want diet/exercise with disease dated forms drug from first where several

you on... any rheum but it's on was message positive what this. the of take

exactly look it putting 23, never is and to in time, plan, help for letting

x-rays/blood again, your this attitude not head keeping get life accomplished

body (there deal person depends believe i know so worse) is... some. standard

must a it. need sign my have heard (it will he/she see are order dr. ton)

tiffany tremendously. all immaculate me have. starting charge sure helps writes:

into taken diagnosed taking research once go you. disease. disease, strict

shelm@... stretching severe at as personally am stress 11:30:06 put

rheum, major that how exercising low form people different yourself. care make

bad themselves deformities. scary level 12/16/2002 active down

> I have large swelling in my knees and fingers...

> I keep hearing people talk about PA deforming joints. That makes me

> quiver in fear. My knees hurt bad and I am only 22!!!

>

> Can I lower my risk of deforming knees by streaching everyday??

>

> As of now I am trying to streach once every 2 days for about an

> hour... Should I do more?? I work on computers all day so I try to

> walk around for an hour at lunch. When I get home I usually take care

> of the kids while my wife goes to work so I don't get much of a

> opportunity to exercise.

>

> Can someone tell me what there schedules are so I can

> compare...

>

> Cheers

[Moderator's note: I wasn't sure whether to reject this message or not since

most of it is totally garbled, but since the first couple of sentences are

intact I'll approve it. I can only guess that the message is garbled perhaps

because there was a lot of HTML formatting in the message (highlighted text,

colored fonts, etc), or perhaps (if I recall correctly, that's

" Pookiegut@...'s " name) has a flaky or corrupt hard disk drive on her

computer, or needs to run a virus scan(?) Ron]

July 15, 2003

Regular ear cleanings are mostly for people who have had open cavity surgery where the middle ear and mastoid are left exposed. If you're going to be having reconstruction then the surgeon will need to rebuild your eardrum which means the middle ear isn't accessible for cleaning. At most they could only suction excessive wax from the ear canal now and again - so probably no need to worry about the torture.

Hope the surgery goes well

Phil

July 26, 2003

, I just wanted you to know that I think your post is excellent. An

MGB is not a free ticket with no accountability and responsibility for what

food choices we make. You are one level headed gal! Good Job. ~K

" Scared "

> I have read several of the e.mails over the last few days concerning

> postops (some relatively " new postops " ) being scared that the surgery

> won't work for them, etc. I read in one e.mail that it was " virtually

> impossible for the MGB to fail " .

>

> I am about to say some things that may not be popular but are true.

>

> Failure is a word that can mean many different things. For example,

> would someone who needed to lose 200 pounds but " only " lost 100 pounds

> consider the MGB a failure? Maybe. Would someone who needed to lose

> 100 pounds and " only " lost 50 pounds consider the MGB a failure? Maybe.

>

> The reality is that statistically anything is possible. There are those

> out there that have been blessed and have lost every ounce of the weight

> they wanted to lose, have no " food issues " and can comfortably maintain

> their weight without ever giving it a second thought. However, I would

> bet they are in the minority. It has taken most of my life (all of

> which until 3 years ago was morbidly obese) to realize that MOST of the

> world watches what they eat on a daily basis - at least those that are

> of " ideal " or healthy body size. Statistics for WLS generally say that

> " most " patients will lose 75% or so of their " excess " body weight. That

> is what happened to me.

>

> My short story -- I got as heavy as 320 pounds. About 10 years ago I

> wanted a baby so badly and all the doctors had told me that if I lost

> weight I could possibly get pregnant so I joined Weight Watchers, took

> it VERY seriously and lost approximately 120 pounds. To my utter

> surprise I got pregnant. I very STUPIDLY gained about 60 pounds during

> the pregnancy (happy eating I called it) and then gained a few more

> after the baby was born. To my utter surprise even at 270 pounds I got

> pregnant again 3 months later. So, two years later I was back at 285 or

> so but with two beautiful boys. I stayed at that weight for several

> years than lost my mother (long story). I decided to save my life.

>

> On the day I had MGB I weighed 286 pounds. My lowest weight following

> surgery was 165 - a loss of about 121 pounds which is 85% or so of my

> excess body weight. I felt good, was wearing size 10's and the world

> was great. BUT -- I had been attending Weight Watchers the entire time

> - from the week after my surgery. It has always given me the structure

> and the accountability that I believe I need. Well, I decided to " take

> a break " from WW and guess what happened. In creeps my old eating

> behaviors and I have managed to regain about 25 pounds! I have now had

> two reconstructive surgeries -a lower body lift (which removed 12-1/2

> pounds of excess skin and tissue) and an inner thigh lift (which removed

> another 4 pounds). I am now hovering right around 180 but am wearing

> 12's and 14's.

>

> I tell you all this to try and make you understand that the MGB is not a

> " magic pill " . The results will be different for everyone. The cold

> hard reality is that MOST of us will have to watch what we eat --

> surprisingly like the rest of the world does. My advice to everyone is

> that you find an eating plan that you can live with. I could never live

> with something like Atkins with low or no carbs, etc. WW is what works

> for me. More importantly it makes me think about what I put in my

> mouth. I try hard not to snack on things like " chips and dip " but I do

> VERY occasionally. I try to think nutrition and fuel with regards to

> what goes in my body. The good news is that even " dieting " with

> something like WW is not the chore that it once was. It is and always

> will be a " control " issue with me - I have to control me!

>

> I am not trying to scare anyone. There are lots of patients who get to

> their goal weight, there are lots that get close but there are some that

> only get halfway or less. Take control of what happens with your body

> now - while your " honeymoon period " is still working!

>

> Good luck everyone!

> in GA

> MGB 10/04/00

> Lower body lift 02/20/03

> Inner thigh lift 03/19/03

>

July 26, 2003

,

I can relate to your story. I had the MGB in May 00. I read the posts but

very rarely post. I always scan through them to see if the subject of

regaining weight comes up. In the last few months weight has been creeping

up and my eating habits havent changed significantly. Which is starting to

worry me. I know diet and exercise have to be an important part more now

than in the beginning. In the beginning weight came off if I exercised or

not. Do you find if you stick to WW or a diet program that youlose weight?

And I pose that question to anyone. I guess the bottom line is I have been

trying to diet and increase exercise but have not seen the scale move. I

know I have room to increase the amount of exercise but definitely could use

some positive feedback.

thanks,

Jen

mgb5/24/00