Re: I am curious how affected you are from RA? Tawny

[Guest guest]

OP - that is osteoporosis - loss of bone density? Side effect from steroids?

Yeah some days I get so down, I sleep so much and part of it is from the

illness, but part is from depression, too, I know. Escaping away from the pain

and change of lifestyle and accusing glares. I hate when I park in handicapped

parking and people have come up to me to tell me - that is a handicapped spot,

and I say yes I know and point to my license plate. I do not park there every

time, only when it is a busy busy day and I am scared, or on a bad bad day when

I have to.

I know a lot of people here face this - the change is lifestyle- I am wondering

how they manage to accept it- or fight it or whatever it is a person does? I

know I confuse people becuz one day I can walk and another day I can't etc...you

know cuz different joints are affected different days.

Around my house? ACK_ what a sad mess that is. Once immaculuate- but it was me

who did it all--and I have no friends or family to help so everything has to

wait for my better days- yukky. THat part keeps me angry.

when I use the scooter- people give me dirty looks if they see me get up from it

and walk, I guess people assume if you are in a scooter it means you absolutely

cannot walk or bear weight at all--it is hard to take those strange looks on

peoples faces. They seem so accusing. when I have days when I have to wear

splints even the people I know who see them on me ask oh what happened. - and

they seem to be expecting some lively sort of funny story about how I was skiing

and whatever or something. On a rare occasion if my feet are really bad, I

might use crutches or a walker- BUT usually my hands are too bad- but- then,

like with the splints on my wrists- people are looking for an entertaining story

about them. I think so many people seem to think any kind of arthritis is just

a catch all word for oh I have a tiny little ache here today--- and when I

decide something is important enough I do want to do it even if I have to use my

scooter or wear my braces in public or fight with crutches- it just bugs me to

have people ask me such questions and then shrug me off if I say I have RA and

Lupus.

I especially hate my sons school. ALways they want me to chaperone field trips

to places riding the school bus there and walking all day- and well- that is

simply not possible, but the teacher keeps calling me and saying but you are

home all day, now. ANd I saw you walking the other day at the school----I do

offer to do things AT school--- the parties etc sometimes and my husband does

weekly stuff in our little guys classroom- and chaperones often. I do offer to

chaperone if I can take my own transportation so I can bring my scooter- but no-

they need the chaperones on the school bus.

SO- anyway, thanks for sharing with me- I do not mean to be on a pity pot- I

mostly wonder how everyone else handles these things. SOme days I know I get

angry over some of this stuff, and I know that is not good or right, and then I

feel bad -- I do not know which is worse, the pain and exhaustion from the

illness or the other social ins and outs of it.

- In , " Tawny " <tawnyokc@s...> wrote:

> Your not alone, we all deal with our new style of life. I have RA,

> lupus, Op, and other ailments. I really miss my life so much, I am

> always depressed. It's such a challenge, and sometimes it gets to be

> too much. My daughter don't understand that I ask her to do more

> things around the house, because I use to. I don't feel like going

> anywhere, and when I do then it has to be planned on my walking

> ability. I know that my family doesn't understand, and I feel they

> get tired of my complaining. So I'm kind of alone in this. And some

> people are so ignorant when they think nothing is wrong with you.

> What they think we want to live like this? I have had people ask me

> if lupus is catching, or if it's like aids. That really burns me

> up. I am just so glad to hear that your still going, and you have

> the will power to keep pushing. I wish that I had your strength. I

> also have dressed down. I use to care so much about my looks, I

> don't give a crap now, what a attitude, I know. I don't think your

> friend should be upset with you about your disability, she should

> understand. Were all with you on this dear, we just got to do the

> best we possibly can, that's all anyone can ask us to do. hugs Tawny

>

>

>

>

>

>

>

> > I am not sure I worded that well. SOrry.

> > I have PA actually..and Lupus and am 45 (this week) I have 3 kids,

> my youngest is 8 and disabled, my oldest is 15 and disabled and my

> husband is ill.

> > I seem to spend a lot of time defending my inabilities to people

> outside my house these days. I did just begin MTX- 3 weeks ago- and

> prior to that I was untreated for my first 2 years.

> > Prior to PA- I was VERY active, loved to crawl thru tunnels and

> tubes with my kids at Chuckee Cheeses, swim, run, garden, etc.

> SOmetimes my kids could not keep up with me, LOL

> > Alas once I began to get sick, I could no longer do any of those

> things. I no longer can take a bath alone, sometimes cannot dress

> alone, cooking can create some challenges. I was wondering if the

> meds make a HUGE difference for people and if everyone gets as

> incapacitated as I feel like I have?

> > My aunt and my mom also have PA and neither of them seems to get as

> severe symptoms as I do. - but it is sorta hard to tell sometimes

> since they have no children left at home and they have not worked in

> years. (even before the PA hit them)

> > I use a scooter for things like the mall, the zoo, museums etc-

> becuz I get so scared about getting partway in and then not being

> able to continue, and I refuse to give up my activities with my

> kids. I found I can still chase them down etc if I use a scooter, if

> I do not use the scooter, usually my ankles and toes flare so bad for

> 3-4 days after an outing.

> > I have moved on from bell bottom blue jeans to funky exotic elastic

> waist pants cuz my fingers and wrists cannot manage blue jeans and on

> days when I cannot comb my hair, I am not always able to get hubby or

> kids to help, either, so I have taken to wearing some really cute

> hats. I usually wear loose wide dresses at home, like a mumu for

> ease in doing things- (I always liked them, anyway) It can be too

> hard to strugle with pants. My friend has MS and she keeps telling

> me I am a wimp- cuz I use the scooter and I wear the elastic waist

> pants. SHe always wants me to go out for coffee with her, I use

> cream in my coffee- and I cannot open those little creamers, and that

> makes her mad at me.

> > How do the rest of you deal with these little day to day issues?

[Guest guest]

Actually was diagnosed with Osteoporosis before starting steroids, so

by still taking them doesn't help. I have taken myself off the

prednisone again(sigh) I don't get to sleep to much, because someone

always has something for me to do. I wish that I could, sometimes I

feel like hiding under the covers, and staying. I also get that, I

go somewhere and people start staring because I'm in a handicap

space. I'm also like you, if I can walk a little better that day, if

it's not busy I will park in a regular spot. Because I just don't

feel like dealing with people.

I also have days that I can walk, and days that I can't. I guess it

is hard for some to understand. I do fall quite a bit here lately.

I have the RA real bad in my fingers, wrists, feet, knees, and neck.

I always have to use wrist protection, need to get me some splints.

I also use a cane when I need to, I think I need a scooter but just

haven't dealt with it yet. I just stay home, don't feel like getting

out anyway. I'm always in pain and fatiqued. I want to just isolate

the world off sometimes. They do the same thing at my daughter's

school, it drives me nut.

So, I do know how you feel, it's tough and were strong to be able to

go through it, physically and mentally. I am so thankful that I'm on

Wellbutrin, been on it about 3 weeks, it's great. I was on Prozac

for quite awhile, and just needed a change. Take care my friend, T

> > > I am not sure I worded that well. SOrry.

> > > I have PA actually..and Lupus and am 45 (this week) I have 3

kids,

> > my youngest is 8 and disabled, my oldest is 15 and disabled and

my

> > husband is ill.

> > > I seem to spend a lot of time defending my inabilities to

people

> > outside my house these days. I did just begin MTX- 3 weeks ago-

and

> > prior to that I was untreated for my first 2 years.

> > > Prior to PA- I was VERY active, loved to crawl thru tunnels and

> > tubes with my kids at Chuckee Cheeses, swim, run, garden, etc.

> > SOmetimes my kids could not keep up with me, LOL

> > > Alas once I began to get sick, I could no longer do any of

those

> > things. I no longer can take a bath alone, sometimes cannot

dress

> > alone, cooking can create some challenges. I was wondering if

the

> > meds make a HUGE difference for people and if everyone gets as

> > incapacitated as I feel like I have?

> > > My aunt and my mom also have PA and neither of them seems to

get as

> > severe symptoms as I do. - but it is sorta hard to tell

sometimes

> > since they have no children left at home and they have not worked

in

> > years. (even before the PA hit them)

> > > I use a scooter for things like the mall, the zoo, museums etc-

> > becuz I get so scared about getting partway in and then not being

> > able to continue, and I refuse to give up my activities with my

> > kids. I found I can still chase them down etc if I use a

scooter, if

> > I do not use the scooter, usually my ankles and toes flare so bad

for

> > 3-4 days after an outing.

> > > I have moved on from bell bottom blue jeans to funky exotic

elastic

> > waist pants cuz my fingers and wrists cannot manage blue jeans

and on

> > days when I cannot comb my hair, I am not always able to get

hubby or

> > kids to help, either, so I have taken to wearing some really cute

> > hats. I usually wear loose wide dresses at home, like a mumu for

> > ease in doing things- (I always liked them, anyway) It can be too

> > hard to strugle with pants. My friend has MS and she keeps

telling

> > me I am a wimp- cuz I use the scooter and I wear the elastic

waist

> > pants. SHe always wants me to go out for coffee with her, I use

> > cream in my coffee- and I cannot open those little creamers, and

that

> > makes her mad at me.

> > > How do the rest of you deal with these little day to day issues?

[Guest guest]

I cannot take Prozac or wellbutrin or any antidpressants becuz I am bipolar- I

suppose a modd stabilizer might help some, but every time I trialed any mood

stabilizer I got worse and had more severe modd swings.

Yeah, hide in bed pull the covers up over my head- some days my husband, if he

is having an alert day he will come stand in my bedrrom doorway and say dear?

dear? HE IS USed to the me he has known 20 years- hypmanic, rowdy and half

wild.

I know the level and instensity of pain blows his mind, too (and mine) I had

all 3 kids with nothing for pain, went less than 6 hours with each baby and

immediately jumped right back into cooking, laundry and shopping had major knee

surgers ago with a foot longcision, and took no pain meds except one pain shot

as I was waking from anesthesia.

ANd now some days you might not always be able to SEE an swelling but man the

pain makes me sob incoherently sometimes.

SO some days I wake up and oh I am gonna take my life back and I am raring to

go- and the next day I am a lump under my covers and then I am sad and then I am

mad and then I am lieke oh this is no big deal-

LOL I go to a Viet Nam wives support group and on occasion I get a bottle of

water out of the machine- (if I forget to bring one from home) and then I stand

there with the dumb bottle trying to get the stupid top off. The group is new

and so we are not bonded strongly yet- and I asked once if someone could open

the water for me gosh- they looked at me like I fell from outer space.

My little guy had a friend whose parents wanted me to babysit him free every

day. I said no, I was too sick to take on more responsibility- at that time I

was training my puppy to stay on my scooter with me in our yard, <giggle> The

little boy a few months later told my son at school that I could not be

disabled, that I made it up- but HIS mom is disabled cuz she had a bunion

removed froher foot and she had a wheelchair and only lazy people use electric

scooters. <sigh>

When I do talk about the illness, I call it RA even tho mine is psoriatic- I

have just a tiny spot of rash, on my tummy and breast- and noone ever heard of

psoriatic arthritis, so it is easier to just say RA.

Why is it when someone is told someone has MS everyone seems to understand MS?

(and if anyone is here with MS- I may be wrong- totally, even- so- please tell

me and share in this conversation) but when you say RA people just do not seem

to have a clue? My friend with MS is MUCH more mobile than me- but people bend

over backwards to help her.

- In , " Tawny " <tawnyokc@s...> wrote:

> Actually was diagnosed with Osteoporosis before starting steroids, so

> by still taking them doesn't help. I have taken myself off the

> prednisone again(sigh) I don't get to sleep to much, because someone

> always has something for me to do. I wish that I could, sometimes I

> feel like hiding under the covers, and staying. I also get that, I

> go somewhere and people start staring because I'm in a handicap

> space. I'm also like you, if I can walk a little better that day, if

> it's not busy I will park in a regular spot. Because I just don't

> feel like dealing with people.

> I also have days that I can walk, and days that I can't. I guess it

> is hard for some to understand. I do fall quite a bit here lately.

> I have the RA real bad in my fingers, wrists, feet, knees, and neck.

> I always have to use wrist protection, need to get me some splints.

> I also use a cane when I need to, I think I need a scooter but just

> haven't dealt with it yet. I just stay home, don't feel like getting

> out anyway. I'm always in pain and fatiqued. I want to just isolate

> the world off sometimes. They do the same thing at my daughter's

> school, it drives me nut.

> So, I do know how you feel, it's tough and were strong to be able to

> go through it, physically and mentally. I am so thankful that I'm on

> Wellbutrin, been on it about 3 weeks, it's great. I was on Prozac

> for quite awhile, and just needed a change. Take care my friend, T

>

>

>

>

>

>

>

>

>

> > > > I am not sure I worded that well. SOrry.

> > > > I have PA actually..and Lupus and am 45 (this week) I have 3

> kids,

> > > my youngest is 8 and disabled, my oldest is 15 and disabled and

> my

> > > husband is ill.

> > > > I seem to spend a lot of time defending my inabilities to

> people

> > > outside my house these days. I did just begin MTX- 3 weeks ago-

> and

> > > prior to that I was untreated for my first 2 years.

> > > > Prior to PA- I was VERY active, loved to crawl thru tunnels and

> > > tubes with my kids at Chuckee Cheeses, swim, run, garden, etc.

> > > SOmetimes my kids could not keep up with me, LOL

> > > > Alas once I began to get sick, I could no longer do any of

> those

> > > things. I no longer can take a bath alone, sometimes cannot

> dress

> > > alone, cooking can create some challenges. I was wondering if

> the

> > > meds make a HUGE difference for people and if everyone gets as

> > > incapacitated as I feel like I have?

> > > > My aunt and my mom also have PA and neither of them seems to

> get as

> > > severe symptoms as I do. - but it is sorta hard to tell

> sometimes

> > > since they have no children left at home and they have not worked

> in

> > > years. (even before the PA hit them)

> > > > I use a scooter for things like the mall, the zoo, museums etc-

> > > becuz I get so scared about getting partway in and then not being

> > > able to continue, and I refuse to give up my activities with my

> > > kids. I found I can still chase them down etc if I use a

> scooter, if

> > > I do not use the scooter, usually my ankles and toes flare so bad

> for

> > > 3-4 days after an outing.

> > > > I have moved on from bell bottom blue jeans to funky exotic

> elastic

> > > waist pants cuz my fingers and wrists cannot manage blue jeans

> and on

> > > days when I cannot comb my hair, I am not always able to get

> hubby or

> > > kids to help, either, so I have taken to wearing some really cute

> > > hats. I usually wear loose wide dresses at home, like a mumu for

> > > ease in doing things- (I always liked them, anyway) It can be too

> > > hard to strugle with pants. My friend has MS and she keeps

> telling

> > > me I am a wimp- cuz I use the scooter and I wear the elastic

> waist

> > > pants. SHe always wants me to go out for coffee with her, I use

> > > cream in my coffee- and I cannot open those little creamers, and

> that

> > > makes her mad at me.

> > > > How do the rest of you deal with these little day to day issues?

[Guest guest]

So your not taking anything for your depression? How about for the

bipolar? You have quite a bit to handle, without some type of help.

Sometimes it takes several different meds before you can find the

right one. It is hard for people who have known you along time, see

how strong you were, and then see you this way. It's just like a

roller-coaster ride, and never getting off.

I guess people have heard so much about MS, and all the efforts of

celebrities to contribute money for research. The RA, they just

don't know, they think it's an old person's disease. So when you

tell them, their like right, OK. You just keep your chin up, and

don't let people get you down, remember you have all of us, Tawny

> > > > > I am not sure I worded that well. SOrry.

> > > > > I have PA actually..and Lupus and am 45 (this week) I have

3

> > kids,

> > > > my youngest is 8 and disabled, my oldest is 15 and disabled

and

> > my

> > > > husband is ill.

> > > > > I seem to spend a lot of time defending my inabilities to

> > people

> > > > outside my house these days. I did just begin MTX- 3 weeks

ago-

> > and

> > > > prior to that I was untreated for my first 2 years.

> > > > > Prior to PA- I was VERY active, loved to crawl thru tunnels

and

> > > > tubes with my kids at Chuckee Cheeses, swim, run, garden,

etc.

> > > > SOmetimes my kids could not keep up with me, LOL

> > > > > Alas once I began to get sick, I could no longer do any of

> > those

> > > > things. I no longer can take a bath alone, sometimes cannot

> > dress

> > > > alone, cooking can create some challenges. I was wondering

if

> > the

> > > > meds make a HUGE difference for people and if everyone gets

as

> > > > incapacitated as I feel like I have?

> > > > > My aunt and my mom also have PA and neither of them seems

to

> > get as

> > > > severe symptoms as I do. - but it is sorta hard to tell

> > sometimes

> > > > since they have no children left at home and they have not

worked

> > in

> > > > years. (even before the PA hit them)

> > > > > I use a scooter for things like the mall, the zoo, museums

etc-

> > > > becuz I get so scared about getting partway in and then not

being

> > > > able to continue, and I refuse to give up my activities with

my

> > > > kids. I found I can still chase them down etc if I use a

> > scooter, if

> > > > I do not use the scooter, usually my ankles and toes flare so

bad

> > for

> > > > 3-4 days after an outing.

> > > > > I have moved on from bell bottom blue jeans to funky exotic

> > elastic

> > > > waist pants cuz my fingers and wrists cannot manage blue

jeans

> > and on

> > > > days when I cannot comb my hair, I am not always able to get

> > hubby or

> > > > kids to help, either, so I have taken to wearing some really

cute

> > > > hats. I usually wear loose wide dresses at home, like a mumu

for

> > > > ease in doing things- (I always liked them, anyway) It can be

too

> > > > hard to strugle with pants. My friend has MS and she keeps

> > telling

> > > > me I am a wimp- cuz I use the scooter and I wear the elastic

> > waist

> > > > pants. SHe always wants me to go out for coffee with her, I

use

> > > > cream in my coffee- and I cannot open those little creamers,

and

> > that

> > > > makes her mad at me.

> > > > > How do the rest of you deal with these little day to day

issues?

[Guest guest]

with my husband and 2 of my kids also bipolar and with my education (I am a

nurse, worked in dementia- ALzheiemers unit mostly, but also Hospice and skilled

care) I got a grip on the meds for that, LOL- Has been an active part of my life

15 years-and the last 5 years I have been a volunteer advocate for bipolar

schoolchildren and and treatment by doctors.

It is hard, a strain and scary cuz my family is estranged- due to my husbands

bipolar, his PTSD from Nam and their feelings about Nam. It leaves us pretty

much on our own- which is part of why I am trying hard to reach out. I am also

trying to learn how others go on from here- with this illness- I know others do

go on- and I want to, too. (well except for the days I would rather curl up

under my covers, LOL)

I am trying to see how they cope with the pain and the limitations and how they

face the challenges. I have such a hard time adapting and makinf accomodations

and concessions day to day becuz maybe today THIS part of my wrist is bad, and

the next day, maybe it is still my wrist, but an entirely different part of my

wrist- and so what worked yesterday maybe does not work today. Does that happen

to others here? Oh I have learned to use- my forearms, LOL I know that might

sound odd to someone who has no idea-

Mostly my fingers, thumbs, wrists and toes flare up- but on occasion, my one

elbow, my other shoulder, my ankles and arches and heels and a hip both knees

and my neck also flare up- and one scary time something in my throat. Rheumy

said it was hyoid?

SO I am still learning all the time how to work around whatever is flaring and

since it changes so much, I am not learning as fast as I would like to.

How do people come up with ways to- handle the jug of milk? open a can? open a

door? do their own seat belt in the car? What do you do when your kids teacher

wants to shake your hand? I do not want to stop the flow of a meeting when they

stick out their hand to shake hands and blurt out, no, I have RA and that would

hurt me unbearably- but I also do not want to seem rude- or-------incompetant.

So- how does everyone here work around things like this?

I have to go to these IEP meetings at my kids schools - they are very important-

and I asked for permission to tape record the meetings since writing is so hard

for me many days- I was denied permission and I called civil liberties people,

who told me the school MUST allow me to tape per MY disability- but- they also

would not take on the case becuz in the big picture they have far more intense

cases going on ---

Then my kids school began to hold the meetings on the 2nd floor of a very old

building inaccessible by my scooter- and they refused to change the room where

the meetings were held. LOL kinda stupid, there I am fighting for my childrens

disability rights and having to also battle for my own disability rights to be

able to fight for my kids rights.

Oh I have learned some things- I have grab bars by the tub and toilet. I have a

headset telephone (holding the phone to my ear was impossible with my wrists so

deformed) Before the kids leave in the morning, they make sure I have water in a

lightweight container with a lid, a phone, and pain meds and something to carry

it all in on a shoulder or around my neck- and crutches. - even if I am having

a great day- just in case it changes thru the day. I have the scooter and a

walker and crutches and splints and braces. I keep slide on shoes close for

when I cannot possibly force my toes, ankles or heels into regular shoes- I got

a lighter weight winter coat cuz my other one was simply too heavy for me to

manage it on a bad day-

But so many things still have me stumped.

SO here I am hoping to learn.

ANd yes, also looking for someone who understands and does not shake their head

at me or tell me to buck up and force thru it.

THanks for being here!

[Guest guest]

Hi dreamer_plus,

You have a lot of the same issues I do.

I have learned that splits and gloves for my hands are not necessary

all the time, but they are never far away.

I had access to burn gloves for ..5 years and they were really

helpful. They applied pressure on my hand and wrist and it really did

help. I looked like a wannabe [my gloves were deep

blue]. My hands stayed looking like hands and not knots

Since the glove manufacturer decided that I did not qualify for them

to make burn compression gloves [i'm not burned], my source has dried

up. I am fighting for the right to wear these gloves, since they help

me. Oh, I also wear weight-lifting gloves for when I need to open a

jar. They grab and do the work. You might want to try that.

I have a tendancy to pick up something[say a dish] and when I lift it

up, the dish goes flying. My family has put a monetary value of 25

cents per dish, so when I break one.. there goes a quarter. I have

replaced my dishes twice in the last 6 months. When I go to a

resturant, my husband sits across from me so if the knife(or fork)

goes flying, it will go towards him. He can duck or catch.

When I am having a lot of trouble, someone in my family will make

sure there is food for me to eat, since sometimes I can't break into

a soup can (hey, the electric can opener I got for Christmas is a

huge help).

With kids you have to be up. I am raising a 5 year old so I know how

difficult that can be. Yesterday we went shopping and with no

arthritis meds in me, I wore out and started hurting real bad. When

we got home, the 5 year old helped me with the groceries and then

when I apologized for yelling [cuz I did] he said.. I think you need

a hug. It helped and then I laid on the couch and he watched

cartoons, so we stayed in the same room. Kids want to help. Tell them

what you wish for because they remember and will suprise you.

As far as school goes, there are local papers in your area? Write a

letter to the Editor and describe the difficulties you have attending

meeting because they are on the second floor. Discuss school stuff in

the papers. They only want good press and if you start writing and

the newspaper publishes it, they'll act to correct the problem.

Sometimes you need to put the school under the public microscope.

I wish I had more help with the laundry and cleaning. We have a

stackable washer/dryer and getting the clothes out is hard... anybody

with suggestions, please give them. This one has me stymied.

DREAMER-PLUS, Were you married to your husband when he was in the

military? What branch was he in? Was he ever stationed at Camp

Lejeune NC? We are former Marine Corps that were stationed there for

3 years. There is a reason for my question dreamer.... I hope you

will answer it.

Good luck with today. I hope it is a good day for you.

I'm going back to bed....

--- In , " dreamer_plus " <dreamer_plus@w...>

wrote:

> with my husband and 2 of my kids also bipolar and with my

education (I am a nurse, worked in dementia- ALzheiemers unit mostly,

but also Hospice and skilled care) I got a grip on the meds for that,

LOL- Has been an active part of my life 15 years-and the last 5 years

I have been a volunteer advocate for bipolar schoolchildren and and

treatment by doctors.

> It is hard, a strain and scary cuz my family is estranged- due to

my husbands bipolar, his PTSD from Nam and their feelings about Nam.

It leaves us pretty much on our own- which is part of why I am trying

hard to reach out. I am also trying to learn how others go on from

here- with this illness- I know others do go on- and I want to, too.

(well except for the days I would rather curl up under my covers,

LOL)

> I am trying to see how they cope with the pain and the limitations

and how they face the challenges. I have such a hard time adapting

and makinf accomodations and concessions day to day becuz maybe today

THIS part of my wrist is bad, and the next day, maybe it is still my

wrist, but an entirely different part of my wrist- and so what worked

yesterday maybe does not work today. Does that happen to others

here? Oh I have learned to use- my forearms, LOL I know that might

sound odd to someone who has no idea-

> Mostly my fingers, thumbs, wrists and toes flare up- but on

occasion, my one elbow, my other shoulder, my ankles and arches and

heels and a hip both knees and my neck also flare up- and one scary

time something in my throat. Rheumy said it was hyoid?

> SO I am still learning all the time how to work around whatever is

flaring and since it changes so much, I am not learning as fast as I

would like to.

> How do people come up with ways to- handle the jug of milk? open a

can? open a door? do their own seat belt in the car? What do you

do when your kids teacher wants to shake your hand? I do not want to

stop the flow of a meeting when they stick out their hand to shake

hands and blurt out, no, I have RA and that would hurt me unbearably-

but I also do not want to seem rude- or-------incompetant.

> So- how does everyone here work around things like this?

> I have to go to these IEP meetings at my kids schools - they are

very important- and I asked for permission to tape record the

meetings since writing is so hard for me many days- I was denied

permission and I called civil liberties people, who told me the

school MUST allow me to tape per MY disability- but- they also would

not take on the case becuz in the big picture they have far more

intense cases going on ---

> Then my kids school began to hold the meetings on the 2nd floor of

a very old building inaccessible by my scooter- and they refused to

change the room where the meetings were held. LOL kinda stupid,

there I am fighting for my childrens disability rights and having to

also battle for my own disability rights to be able to fight for my

kids rights.

> Oh I have learned some things- I have grab bars by the tub and

toilet. I have a headset telephone (holding the phone to my ear was

impossible with my wrists so deformed) Before the kids leave in the

morning, they make sure I have water in a lightweight container with

a lid, a phone, and pain meds and something to carry it all in on a

shoulder or around my neck- and crutches. - even if I am having a

great day- just in case it changes thru the day. I have the scooter

and a walker and crutches and splints and braces. I keep slide on

shoes close for when I cannot possibly force my toes, ankles or heels

into regular shoes- I got a lighter weight winter coat cuz my other

one was simply too heavy for me to manage it on a bad day-

> But so many things still have me stumped.

> SO here I am hoping to learn.

> ANd yes, also looking for someone who understands and does not

shake their head at me or tell me to buck up and force thru it.

> THanks for being here!

[Guest guest]

You gave me such a wonderul idea. I am going to write a letter to

the local paper, to see if they will run an article on RA. To put it

out there, so people will understand the disease. Maybe with a

little more education, we don't have to deal with such hostility all

the time. If we all would do this in our states, it might be a plus

for us, and others. Thanks for the idea motown_4. Thanks Tawny

> > with my husband and 2 of my kids also bipolar and with my

> education (I am a nurse, worked in dementia- ALzheiemers unit

mostly,

> but also Hospice and skilled care) I got a grip on the meds for

that,

> LOL- Has been an active part of my life 15 years-and the last 5

years

> I have been a volunteer advocate for bipolar schoolchildren and and

> treatment by doctors.

> > It is hard, a strain and scary cuz my family is estranged- due to

> my husbands bipolar, his PTSD from Nam and their feelings about

Nam.

> It leaves us pretty much on our own- which is part of why I am

trying

> hard to reach out. I am also trying to learn how others go on from

> here- with this illness- I know others do go on- and I want to,

too.

> (well except for the days I would rather curl up under my covers,

> LOL)

> > I am trying to see how they cope with the pain and the

limitations

> and how they face the challenges. I have such a hard time adapting

> and makinf accomodations and concessions day to day becuz maybe

today

> THIS part of my wrist is bad, and the next day, maybe it is still

my

> wrist, but an entirely different part of my wrist- and so what

worked

> yesterday maybe does not work today. Does that happen to others

> here? Oh I have learned to use- my forearms, LOL I know that might

> sound odd to someone who has no idea-

> > Mostly my fingers, thumbs, wrists and toes flare up- but on

> occasion, my one elbow, my other shoulder, my ankles and arches and

> heels and a hip both knees and my neck also flare up- and one

scary

> time something in my throat. Rheumy said it was hyoid?

> > SO I am still learning all the time how to work around whatever

is

> flaring and since it changes so much, I am not learning as fast as

I

> would like to.

> > How do people come up with ways to- handle the jug of milk? open

a

> can? open a door? do their own seat belt in the car? What do you

> do when your kids teacher wants to shake your hand? I do not want

to

> stop the flow of a meeting when they stick out their hand to shake

> hands and blurt out, no, I have RA and that would hurt me

unbearably-

> but I also do not want to seem rude- or-------incompetant.

> > So- how does everyone here work around things like this?

> > I have to go to these IEP meetings at my kids schools - they are

> very important- and I asked for permission to tape record the

> meetings since writing is so hard for me many days- I was denied

> permission and I called civil liberties people, who told me the

> school MUST allow me to tape per MY disability- but- they also

would

> not take on the case becuz in the big picture they have far more

> intense cases going on ---

> > Then my kids school began to hold the meetings on the 2nd floor

of

> a very old building inaccessible by my scooter- and they refused to

> change the room where the meetings were held. LOL kinda stupid,

> there I am fighting for my childrens disability rights and having

to

> also battle for my own disability rights to be able to fight for my

> kids rights.

> > Oh I have learned some things- I have grab bars by the tub and

> toilet. I have a headset telephone (holding the phone to my ear

was

> impossible with my wrists so deformed) Before the kids leave in the

> morning, they make sure I have water in a lightweight container

with

> a lid, a phone, and pain meds and something to carry it all in on a

> shoulder or around my neck- and crutches. - even if I am having a

> great day- just in case it changes thru the day. I have the

scooter

> and a walker and crutches and splints and braces. I keep slide on

> shoes close for when I cannot possibly force my toes, ankles or

heels

> into regular shoes- I got a lighter weight winter coat cuz my other

> one was simply too heavy for me to manage it on a bad day-

> > But so many things still have me stumped.

> > SO here I am hoping to learn.

> > ANd yes, also looking for someone who understands and does not

> shake their head at me or tell me to buck up and force thru it.

> > THanks for being here!

[Guest guest]

In a message dated 08/03/2004 22:46:42 Central Standard Time,

dreamer_plus@... writes:

> becuz maybe today THIS part of my wrist is bad, and the next day, maybe it

> is still my wrist, but an entirely different part of my wrist- and so what

> worked yesterday maybe does not work today. Does that happen to others here?

This happens to me a lot...it varies day to day what is worst and what is

better...it is so weird, but never dull, that's for sure! Cary

[Guest guest]

In a message dated 09/03/2004 16:36:23 Central Standard Time,

Matsumura_Clan@... writes:

> LOL, Cary! Compassionate nurses have the right to imagine whatever sort

> of satisfying action they would like to take against someone who says

> something irritating!

>

>

>

>

>

Good thing, ...cuz I have on heck of an imagination! And it keeps me

sane and pleasant (outwardly, anyways!) Cary

[Guest guest]

In a message dated 09/03/2004 16:36:25 Central Standard Time,

bureau97504@... writes:

> This group helps so much.......just to know that

> others are going thru the same thing and can talk

> about it helps me immensely.......and most of you in

> the group have way more to deal with than I do so I

> love and respect you all very much

>

>

Pat-I know what you mean....until I hooked up with these wonderful people I

spent a lot of time being really angry and balling my eyes out over my pain and

diagnosis. Nothing like friends to help you get things in perspective and

feel less alone. I've never met one person on this list, but I love every one

of them!!!!!!!!!! Cary

[Guest guest]

YES, the electric can opener is great- most of the time, anyway, sometimes the

cans themself are to heavy- yees, LOL. I also got a Black ad Decker jar opener

for Christmas, and also we got hese loopy looking things that might help opening

jars, too, maybe.

MY kids bipolar is pretty unstale ad they are not much hep to me the way they

are right now- asing them to do aything sets them off on a tantrum.

I have these glove thingies I got in the ace bandage section of our pharmacy- I

think they might e similar to burn gloves- they compress, not as much as burn

gloves probably do- but some- PLUS- I also wear them just to send the mesage-0

do not squeeze my hand. I have 2 pairs one black and one flesh. I admit, I

wear them often - especially the blac ones, mostly to keep people away from my

poor hands. But, I think they also help the swelling and pain, a little too.--

on the days a wrist brace is not necessary.

I doubt I will write to my paper- becz- our county seems to be pretty anti

sympathetic to anything- They have kept a batered womens shelter from opening,

eve tho it was funded thru private donatons, they closed 3 autistic childrens

homes, 6 group homes for mentally ill young adults learning to live

independantly, and they kept a homeless veterans shelter from opening, even tho,

it, to was funded privately. hile awaiting for my social securit to begin, I

aplied for reduced schol unches and a registration fee waiver for my kids for

school (regitration this year for PUBLIC school turned out to cost me nearly

$300 per child, which is what prompted me t aply for the waiver) WHile we were

doing te registration process, canot believe how rude crass, bold and

insenstive so many of the people were when they sa " fee waiver " and " reduced

lunch " on our paperwork. 2 days later a very ugly editorial apeared in our

paper about the lazy people who refuse to support their children " I cried for

weeks.

I was not with my husband when he was active in Marine Corps. He served from

67-78. He did 36 months in Nam. He also was in Okinawa for a while. I met him

in 85. In 91 he became very ill, catatonic.... Prior to tha he was a highly

successful systems analyst in Chicago. He has not worked since 91. He was

stationed a Camp Pendleton and also Quantico. It took till 95 before his private

psychiatrist figured out the catatonia and filure to thrive were related to

combat- and at tha time he began to go to the VA hospital for treatment. He aso

bega working to get ilitary benefits. This past Oct we finally got him his 100%

permanant, total and now me and the kids finally have health coverage again-

thru Chanmp VA. ut alas in addition to his PTSD, he hastumors from AGent Orange

in his brain, lungs, both kidneys.

Getting the PA really caught me by total surprise- and it scared me trribly.

My husband cannot take care of himsef, much less a house or kids. My oldest

will never be a independant adult, and my youngest might not evr be, either.

Being estranged from y family was the best choice, but it still hurts so much.

My husband has no family, his died.

I TRY Hard to stay upbeat----- erally try, for I KNOW how important it is.

SO, I am hanging on and fighting back at this PA and doing what I can when I

can.

- In , " motown_4 " <motown_4@y...> wrote:

> Hi dreamer_plus,

> You have a lot of the same issues I do.

> I have learned that splits and gloves for my hands are not necessary

> all the time, but they are never far away.

> I had access to burn gloves for ..5 years and they were really

> helpful. They applied pressure on my hand and wrist and it really did

> help. I looked like a wannabe [my gloves were deep

> blue]. My hands stayed looking like hands and not knots

> Since the glove manufacturer decided that I did not qualify for them

> to make burn compression gloves [i'm not burned], my source has dried

> up. I am fighting for the right to wear these gloves, since they help

> me. Oh, I also wear weight-lifting gloves for when I need to open a

> jar. They grab and do the work. You might want to try that.

> I have a tendancy to pick up something[say a dish] and when I lift it

> up, the dish goes flying. My family has put a monetary value of 25

> cents per dish, so when I break one.. there goes a quarter. I have

> replaced my dishes twice in the last 6 months. When I go to a

> resturant, my husband sits across from me so if the knife(or fork)

> goes flying, it will go towards him. He can duck or catch.

> When I am having a lot of trouble, someone in my family will make

> sure there is food for me to eat, since sometimes I can't break into

> a soup can (hey, the electric can opener I got for Christmas is a

> huge help).

> With kids you have to be up. I am raising a 5 year old so I know how

> difficult that can be. Yesterday we went shopping and with no

> arthritis meds in me, I wore out and started hurting real bad. When

> we got home, the 5 year old helped me with the groceries and then

> when I apologized for yelling [cuz I did] he said.. I think you need

> a hug. It helped and then I laid on the couch and he watched

> cartoons, so we stayed in the same room. Kids want to help. Tell them

> what you wish for because they remember and will suprise you.

> As far as school goes, there are local papers in your area? Write a

> letter to the Editor and describe the difficulties you have attending

> meeting because they are on the second floor. Discuss school stuff in

> the papers. They only want good press and if you start writing and

> the newspaper publishes it, they'll act to correct the problem.

> Sometimes you need to put the school under the public microscope.

>

> I wish I had more help with the laundry and cleaning. We have a

> stackable washer/dryer and getting the clothes out is hard... anybody

> with suggestions, please give them. This one has me stymied.

>

>

> DREAMER-PLUS, Were you married to your husband when he was in the

> military? What branch was he in? Was he ever stationed at Camp

> Lejeune NC? We are former Marine Corps that were stationed there for

> 3 years. There is a reason for my question dreamer.... I hope you

> will answer it.

> Good luck with today. I hope it is a good day for you.

> I'm going back to bed....

>

>

>

> > with my husband and 2 of my kids also bipolar and with my

> education (I am a nurse, worked in dementia- ALzheiemers unit mostly,

> but also Hospice and skilled care) I got a grip on the meds for that,

> LOL- Has been an active part of my life 15 years-and the last 5 years

> I have been a volunteer advocate for bipolar schoolchildren and and

> treatment by doctors.

> > It is hard, a strain and scary cuz my family is estranged- due to

> my husbands bipolar, his PTSD from Nam and their feelings about Nam.

> It leaves us pretty much on our own- which is part of why I am trying

> hard to reach out. I am also trying to learn how others go on from

> here- with this illness- I know others do go on- and I want to, too.

> (well except for the days I would rather curl up under my covers,

> LOL)

> > I am trying to see how they cope with the pain and the limitations

> and how they face the challenges. I have such a hard time adapting

> and makinf accomodations and concessions day to day becuz maybe today

> THIS part of my wrist is bad, and the next day, maybe it is still my

> wrist, but an entirely different part of my wrist- and so what worked

> yesterday maybe does not work today. Does that happen to others

> here? Oh I have learned to use- my forearms, LOL I know that might

> sound odd to someone who has no idea-

> > Mostly my fingers, thumbs, wrists and toes flare up- but on

> occasion, my one elbow, my other shoulder, my ankles and arches and

> heels and a hip both knees and my neck also flare up- and one scary

> time something in my throat. Rheumy said it was hyoid?

> > SO I am still learning all the time how to work around whatever is

> flaring and since it changes so much, I am not learning as fast as I

> would like to.

> > How do people come up with ways to- handle the jug of milk? open a

> can? open a door? do their own seat belt in the car? What do you

> do when your kids teacher wants to shake your hand? I do not want to

> stop the flow of a meeting when they stick out their hand to shake

> hands and blurt out, no, I have RA and that would hurt me unbearably-

> but I also do not want to seem rude- or-------incompetant.

> > So- how does everyone here work around things like this?

> > I have to go to these IEP meetings at my kids schools - they are

> very important- and I asked for permission to tape record the

> meetings since writing is so hard for me many days- I was denied

> permission and I called civil liberties people, who told me the

> school MUST allow me to tape per MY disability- but- they also would

> not take on the case becuz in the big picture they have far more

> intense cases going on ---

> > Then my kids school began to hold the meetings on the 2nd floor of

> a very old building inaccessible by my scooter- and they refused to

> change the room where the meetings were held. LOL kinda stupid,

> there I am fighting for my childrens disability rights and having to

> also battle for my own disability rights to be able to fight for my

> kids rights.

> > Oh I have learned some things- I have grab bars by the tub and

> toilet. I have a headset telephone (holding the phone to my ear was

> impossible with my wrists so deformed) Before the kids leave in the

> morning, they make sure I have water in a lightweight container with

> a lid, a phone, and pain meds and something to carry it all in on a

> shoulder or around my neck- and crutches. - even if I am having a

> great day- just in case it changes thru the day. I have the scooter

> and a walker and crutches and splints and braces. I keep slide on

> shoes close for when I cannot possibly force my toes, ankles or heels

> into regular shoes- I got a lighter weight winter coat cuz my other

> one was simply too heavy for me to manage it on a bad day-

> > But so many things still have me stumped.

> > SO here I am hoping to learn.

> > ANd yes, also looking for someone who understands and does not

> shake their head at me or tell me to buck up and force thru it.

> > THanks for being here!