new and need info

[Guest guest]

I have been looking around since my dx with pa six weeks ago, and am

not finding anything really new - most of the sites and posts focus

on the different medications available, and the obvious signs and

symptoms, and which diseases are similar. Having been this route

with other autoimmune diseases in the past four years, I figured I'd

go straight to the source - people out there who are actually living

with p and pa, and able to regain some activity / control over their

lives. My main question is this: What should I know about how to

live well with pa, or what do you wish someone would have shared with

you when you found out about it?

[Guest guest]

" a rheumatologist not stuck on old treatments or unsupportive thinking "

gosh.... talk about a vanishing species... I'd give what's left of the use of my

left arm for someone like that.

My first rheumy diagnosed PA and was very aggressive getting it under

reasonable control... been on 22 milligrams of MTX injected once a week for

almost 2

years now... been on MTX for almost 3 years total. PA under reasonable

control... only 2 flares last year, managed to avoid steroid shot both times...

toughed it out... but this MD moved to Colorado a year ago... left me in the

care

of her partner... she decides I have fibro... and osteo arthritis...OK if

that's true why do I have measurable increases in sed rate and C-reactive

protein? So I decided to see the new wonderkid in the Rheumatology dept of the

teaching hospital where I work... He is appalled at condition of both knees,

says

they will need to be replaced,,, but he's stuck on osteo diagnosis too... he

cant allow both possibilities; He continued my meds... MTX included for a year

now... but when my scooter died he was less than helpful so far in getting it

replaced... told insurance co...I had very bad osteo and morbid obesity... left

off the part about PA completely....

The doctors I work for in Infectious Disease know more about autoimmune

disease than he seems to... they sure know more about disease process...when

they

heard of my annoyance, they advised me to use the phrase " fleas and lice " .

Apparently in the ID business, you can often see examples of more than one

problem cause people are often not pretty text book cases. I would love to find

someone locally that might consider more than just their little specialized

piece

of me at a time.

[Guest guest]

Fellow Sufferer,

We are friends hear, one and all. Where are you located? Someone

here has probably been to or heard of a good rheumy in your area.

I was once told my PA was in remission and then treated for Osteo and

a stenosis. The stenosis necessitated back surgery (and blessed

relief) only to show that the PA was NOT in remission but was masked

by the stenosis.

I have a new rheumy who believes that I was misdiagnosed with the

remission thing and has added PS (psoriatic spondylitis) to the list.

Oh, yes, I have bad knees and am overweight - but you can't lose

weight when you can't walk much because of pain. And OA is possible

along with PA/PS.

I am under pain control because we are working from a more complete

diagnosis. You need to get to a good rheumy. Ask your co-workers if

they know any good ones. And please, let us know where you are so

that we can make some suggestions.

Welcome to our growing circle, JudiRose

[Guest guest]

> " a rheumatologist not stuck on old treatments or unsupportive

thinking "

> gosh.... talk about a vanishing species... I'd give what's left of

the use of my

> left arm for someone like that.

>

>.. she decides I have fibro... and osteo arthritis...OK if

> that's true why do I have measurable increases in sed rate and C-

reactive

> protein? So I decided to see the new wonderkid in the Rheumatology

dept of the

> teaching hospital where I work... He is appalled at condition of

both knees, says > advised me to use the phrase " fleas and lice " .

>

Hi,

I share your frustration. Even though I have a severe case of fibro

I sometimes wish the word was never invented. I run into Docs who

insist it must be one or the other....I want to say...hello...maybe I

have all of these together...

This group has helped me stay centered on the basic PA problem. Just

when I think maybe I am nuts someone will write with the exact

symptoms as me and I realize that PA is a greater problem for me than

some of the Docs admit.

I am new to being overweight. Was slim for most of my life. No

doubt a person gets viewed and treated differently by the Docs. They

see it as a catchall for medical problems. Even my internist, who I

like, said well...you get these overweight women who are just plain

lazy...then turned red and said he realized I was not lazy and was

doing all I could for my wieght problem.

I'll try to remember the phrase you gave us. Thanks

Marti

[Guest guest]

Beth, sorry this is so late. Your question is a very good and important one.

There are many ways to make living with this disease easier. There is much in

the archives about what we all do to accomodate and I don't have time to go into

it right now but anything that makes any chore easier should be enlisted. It is

the simple things that I never thought about that cause me the most grief. I

thought I was going to have to quit my job because I do so much stapling and the

pain in my hands was unbearable. My husband suggested an electric stapler, but

I was resistant because I didn't want my coworkers to focus on my disability.

He, always wiser than me, got one, brought it into the office, plugged it in and

it was a miracle for me. Also I, and a lot of others here, use the fat pens,

steering wheel covers for better grip, and a multitude of aids to get through

the day. I don't apologize for any of it either. It is just a fact that we

need aids and they are available. I also requested that my pharmacy put the

easy open lids on my meds. I can't get the child protective ones off. Do

whatever you need to do. Good Luck, Cheri:-))

P.S. Have you seen that adjustable, gooseneck thing for holding the hair dryer?

That is going to be my next AID! I am having a terrible time fixing my hair.

If it works, I could hug whoever came up with that one. Wish is had been me

;-))

[Guest guest]

Ok......

Speaking of easier things to make your life easier with PA....

Anybody found a vaccum that wont make our hands hurt and gives a good GRIP?????

I work in rescue, have three to four or five dogs in my house at a time, and I

NEED A VACCUM THAT IS GOOD AND STRONG. Hardwood floors, but will have carpet

later........

Advise please. I have the dry, thin and red and raw and sore hands of a person

on Soriatane. HELP!

<wishing she had Enbrel N O W>

LeAnn Cayer & Furbrats Blossom & Meriko

Heart Bandits American Eskimo Dog Rescue

Railroad Coordinator www.heartbandits.com

[Guest guest]

My husband does the vacuuming around here and he went through 4 or 5 different

kinds after he wrecked his shoulder and he has finally settled on the Oreck. I

can even use it with my bad neck and hands. It is lightweight and really sucks

(which is what you want in a vacuum, right?). I can even do the stairs. Just

for fun I got him a Roomba for Christmas but he hasn't taken it out of the box

yet so don't know how it works. I know this is a serious problem after watching

him struggle with it for so long, not to mention the money we have wasted on

vacuums over the past few years. I don't know if anything can stand up to 5

dogs but you can try it and return it if you don't like it.

Cheri

[Guest guest]

<<It is lightweight and really sucks (which is what you want in a

vacuum, right?). Cheri>>

LOL! Good to have you back to your old self, Cheri! Sorry the

effexor didn't work for you though.

I have a self-proplelled vacuum and if I remember to do it right-

letting the vacuum do the work it helps me. It isn't too lightweight

though

Marti

[Guest guest]

Cheri, Those child proof bottles are easy to open - you use a hammer

if you don't have a child handy. ;-)

JudiRose

> Beth, sorry this is so late. Your question is a very good and

important one. There are many ways to make living with this disease

easier. There is much in the archives about what we all do to

accomodate and I don't have time to go into it right now but anything

that makes any chore easier should be enlisted. It is the simple

things that I never thought about that cause me the most grief. I

thought I was going to have to quit my job because I do so much

stapling and the pain in my hands was unbearable. My husband

suggested an electric stapler, but I was resistant because I didn't

want my coworkers to focus on my disability. He, always wiser than

me, got one, brought it into the office, plugged it in and it was a

miracle for me. Also I, and a lot of others here, use the fat pens,

steering wheel covers for better grip, and a multitude of aids to get

through the day. I don't apologize for any of it either. It is just

a fact that we need aids and they are available. I also requested

that my pharmacy put the easy open lids on my meds. I can't get the

child protective ones off. Do whatever you need to do. Good Luck,

Cheri:-))

>

> P.S. Have you seen that adjustable, gooseneck thing for holding

the hair dryer? That is going to be my next AID! I am having a

terrible time fixing my hair. If it works, I could hug whoever came

up with that one. Wish is had been me ;-))