Re: in reply 2 Jenna

[Guest guest]

Jenna,

The thought of an RA community is never far away from my thoughts. I

am always thinking of ways I can help myself instead of being totally

dependent on doctors appts and medications (symptom relief), others.

If I can help myself, I can then help others. I am not bedridden

and that's something to celebrate but quality of life is really

pitiful. No medicine has touched the pain for a very long time. It

takes 24 mg of prednisone to experience real relief from the pain.

So, making things better for myself is a constant goal. Also

fighting new diagnoses all while fighting RA is something we face as

well. I know I need tools and gadgets to pick things up so there is

a market there. I need help in and out of the bathtub and with

steps, so there is a market there for better improved gadgets for

that, so on and so forth. Not even hip replacement will fix some of

the things I still have to have done. I will be able to stand longer

but not much more will change. The RA has affected waaay too many

joints for that...so gadgets, hiring helpers, living where the things

I need to make life a quality one is the way to go. Therapy muscle

strengthening is another way to go. That's not to say I would turn

help away if it were offered but just don't care to be in a position

of dependence. That's the thing about this condition -- it threatens

the freedom and independence, the things we cherish. Some have no

choice the condition has been around too long and has done so much

damage. Sometimes the progress of the condition is slowed greatly

and sometimes joint damage happens quickly. You just never know.

I'd like the RA community to still allow as much independence as

possible and give nursing homes a run for their money. And it will

be different in that is isn't for the seniors only, but any adult

with RA or similar limitations, and that everyone carries on as usual

but only have things a little closer to them so as not to do all of

that traveling back and forth to appts, groceries, etc. there is

still loads to work out. I am sure I will find grants of some sort

to make this happen. seeing how many are without support helps to

see the demand for that type of environment.

please overlook typos and caps…hands are not behaving themselves.

peace and healing energy to you,

Ebony

>

> -I am with Ebony, all the way. I took care of my grandmother and my

> mother when they were ill. My kids are to busy, and they don't

really

> think anything is wrong with me because they can't see it. So until

> someone figures out that I am sick and I need a little help now

and

> then I plan on hiring a high school kid to help out with whatever I

> need done because I can't do it all anymore. I don't think that our

> children have the same " family ethic " that we had....you know

taking

> gram to the dr. or checking her BP 3x a day for a month....they

just

> don't see that they have any responsibility for anyone but

themselves

> and their children. And thats ok if they can't see it, I am not

going

> to be the one to point it out to them. But I'm not going to go

> without having things done that need doing that I cant do either!

AS

> long as I can I will take care of myelf.....and maybe because I

have

> to do it....I will be able to do it longer. Because I can't sit

back

> and have it done for me without it costing some of my precious SSDI

> money....and that isn't even enough to may rent here in AZ to say

> nothing avout meds and eating....which I have grown rather used

> to...eating I mean!! ANd as for nursing home......don't even go

there

> with me.....I have seen too much.....not over my dead body!!!! I

will

> manage on my own thanks. Maybe we should start working a little

> harder on that community thing....because that may be a viable

answer

> for those of us who are alone!!!!.........jenna

[Guest guest]

> >

> > -I am with Ebony, all the way. I took care of my grandmother and

my

> > mother when they were ill. My kids are to busy, and they don't

> really

> > think anything is wrong with me because they can't see it. So

until

> > someone figures out that I am sick and I need a little help now

> and

> > then I plan on hiring a high school kid to help out with

whatever I

> > need done because I can't do it all anymore. I don't think that

our

> > children have the same " family ethic " that we had....you know

> taking

> > gram to the dr. or checking her BP 3x a day for a month....they

> just

> > don't see that they have any responsibility for anyone but

> themselves

> > and their children. And thats ok if they can't see it, I am not

> going

> > to be the one to point it out to them. But I'm not going to go

> > without having things done that need doing that I cant do

either!

> AS

> > long as I can I will take care of myelf.....and maybe because I

> have

> > to do it....I will be able to do it longer. Because I can't sit

> back

> > and have it done for me without it costing some of my precious

SSDI

> > money....and that isn't even enough to may rent here in AZ to

say

> > nothing avout meds and eating....which I have grown rather used

> > to...eating I mean!! ANd as for nursing home......don't even go

> there

> > with me.....I have seen too much.....not over my dead body!!!! I

> will

> > manage on my own thanks. Maybe we should start working a little

> > harder on that community thing....because that may be a viable

> answer

> > for those of us who are alone!!!!.........jenna

I agree with both of you. I have recently moved to Florence SC

because I was able to realize a profit from my townhouse in

andria, VA and I was able to purchase a house all on one level

here in SC. I could probably quailfy for SSI, but I just don't think

I could stand the stress going thru the progress. Right now I feel

sooo fortunate, I made enought profit that I think I'm able to

retire at age 59 so I'm not going to go thru the system. Sometimes I

feel lazy, but most of the time I honestly feel I'm really looking

after my health. I've invited my 4 children, 4 grandkids and some

friends for Thanksgiving. I plan on taking a few weeks to get

everything ready and a couple of weeks of sleep to recover, but I'm

looking forward forward to it.

Colleen>