Re: How debilitated/Deformed Have you Become with RA

[Guest guest]

Old tennis balls....on vacuum wand, etc

fat pens

fat toothbrush   electric works

Look for pump toothpaste dispencers

I only wear jewlery if someone can assist

Good luck

Raniolo

From: EllenSangWildfeuer <LNWILD@...>

Subject: [ ] How debilitated/Deformed Have you Become with RA

Date: Thursday, September 16, 2010, 1:09 PM

 

Altho only diagnosed this week I already see changes in the anatomy of my hands

especially, and of course the function is diminished too. Do any of you use

" aids " to help you--putting on pierced earring is a killer alrady--holding my

toothbrush in the morning, zip loc bags--many new challenges for this old gal.

As an RN I was always on the advice end of the patient relationship--but now I

am the patient so I appreciate any and all advice. Thanks. ellen

[Guest guest]

i use fat pens and switch out with fountain pens when i can- less pressure to

write. cannot operate a crank can opener- have to use electric. have a " grabby "

thing for picking stuff off floor, or high/low spaces. tully heel inserts for my

sneakers,lumbar supports in car, office chair, and home, also have a tens unit

for back issues. h'mmm...sleep in braces to help straighten my thumbs. gosh,

they really add up, don't they! they're such a part of my life now that I don't

think about them too much.

>

> Altho only diagnosed this week I already see changes in the anatomy of my

hands especially, and of course the function is diminished too. Do any of you

use " aids " to help you--putting on pierced earring is a killer alrady--holding

my toothbrush in the morning, zip loc bags--many new challenges for this old

gal. As an RN I was always on the advice end of the patient relationship--but

now I am the patient so I appreciate any and all advice. Thanks. ellen

>

[Guest guest]

i read this thread and it made me think - alot. i worry about myself, somedays

i am very aware of every joint in my body, because of the inflammation, every

with the drugs, everything hurts, and i never know from day to day how i will

feel. its daunting, and even though i am being treated with what they call

agressive treatments, i often wonder about this 10 yr mark doctors will give you

" most people within 10 years become disabled " blah blah.

For example, I was minding my own biz, my metatarsals were hurting on my right

foot, and i was ignoring but i decided to go to the doctor and POOF I have a

stress fracture, i didnt even do anything to myself, i didnt hit it, i didnt

step wrong and look.

who the heck knows what will happen tomorrow? I am not living in fear for sure,

but the uncertainty get you once in a while....

OKD

[Guest guest]

Sorry to hear you aren't feeling well.  I do know how painful RA can be.   I

have past the 20 year mark with RA.   I had nodules on my elbows that made it

look like I have 3 elbows when I was diagnosed with RA.  To my surprise they

went away.    I had just forgotten about them because I wore long sleeve

blouses.   I was going to show them to my friend I had not seen in a long time

and they were gone.  Imagine they had disappeared and I hadn't noticed.  I guess

I was still half asleep when I took my shower in the mornings.   I remember

taking an elevator instead of going down 3 step because my knees hurt so bad.  

I had my hair permed curly because I had hard time raising my arms.  Moved

dishes to lower shelves, anything to make it easier.   Methrotrexate was the

drug that keep me functional.   I thought of retiring early one time and asked

the rheumy about it and he said most people did better to keep working.   I

suspose that is

true unless you have a real physical job.   Somewhere around 2002-2004 my pain

went away.  I had ask rheumy about discontinuing Methrotrexate but he said the

pain would return.

After several infections I stopped the methrotrexate last Nov ,    So far I'm

good, I am seeing a doctor of osteopath, taking lots of supplements, nutrition

shots, and on low dose naltrexone since May of this year.     I am finally

beginning to have some energy.   This is longer than I meant for it to be, but

wanted you to know there can be better days.  I keep following the group, just

in case I have problems again.    I forgot to mention that I used a hot tub

every moring and night when I was really bad.   The joints don't hurt in the

water ( temp 102) and are much more flexible.  Wishig everyone pain free days,

[Guest guest]

Thanks Chris/Barbara for your lovely replies.

You are 100% right I refuse to live in fear. This definitely is

something you have to take one day at a time.

I am constantly searching for alternative remedies in food, herbs, because I

know its out there.

PS - Barbara I live in NYC, but I wished it was sunny California - L0L:))

Thanks all,

OKD