Re: greetings tomkat (way long post lol)

[Guest guest]

Hi Tomkat:

Welcome to the group - actually it's more like family

to me! There are lots of very friendly, very

supportive people here, and you have come to the right

place - we truly do understand what you are going

through.

No, you are not the laziest person on the earth - you

have a disease, an autoimmune system disease that does

not just affect your joints, but affects your entire

body, and causes fatigue. This fatigue is beyond

being tired, taking a nap, and getting up feeling

better. This fatigue can be overwhelming at times.

You need to learn to pace yourself with your

housework.

I do one room at a time, in fifteen minute blocks of

work, with rest, and then continue, to a total of one

hour. If I am not done in one hour, I continue the

next day. I do not push myself because I have found

that if I do, I will be kicked in the butt the next

day and not be able to finish what I started the day

before.

It's very hard for others to understand - you look the

same, you sound and act the same, but inside of you,

there is pain, stiffness, and fatigue. They can't see

it. It's not like a wound where they can see you are

hurt and need to take rest and heal. But that is what

RA is. Most of us look " normal " , and do not yet need

assistive devices, or have deformities of our joints.

I have some finger deformities, more from OA than RA,

but nothing that stands out, and I do use my cane at

times to help on bad days, but otherwise I am the same

old self. I know that people look and think, well if

she just lost weight she would not have to hobble like

that, well, I might not hobble as badly, but I would

still hobble from hip, knee, ankle and foot pain that

they cannot see.

Give your husband time to wrap his head around this

whole thing. You have been one way together for 33

years and this is a big change. He is probably very

worried about what is happening to his wife, and what

is happening to your future that you had planned.

What I did when I was first diagnosed at 45 (7 years

ago) was to leave books around on RA that I had gotten

from the library, so that my hubby and kids, if so

inclined could read them, or I would read pertinent

sections outloud to them. I also emailed my hubby

info as it seemed like it was easier for him to read

about it than sit and listen to me talk about it. To

him, and myself, it sounded more like I was whining or

complaining, so on paper the emotion was taken out.

It's been seven years now, with additional diagnoses

of Raynauds, OA and Fibromyalgia, but my family is

rolling with the punches so to speak, and have come to

accept mom as being slower and less energetic than she

used to be, and they help me when I ask for it. I

should ask for it more, but I am stubborn sometimes.

My last stubborn time, though, two weeks ago, left me

with second degree burns on my right hand from a pot

of boiling water and pasta, which I was determined to

carry to the sink and drain on my own. Bad decision

and not one I will make again. Beware RA hands and

big pots of boiling water lol. Ask for help when you

need it, and pace yourself.

Concentrate on the more important things in your life

-I have found that my home can get a little messy and

need dusting and vaccumming, but I spend more time

talking and being with my children, now 19 and 22,

than I did before. I have more time to read and enjoy

my animals (I have horses, dogs, chickens and various

fowl, and even get in a ride about once a week, body

and weather willing - I need a step ladder and more

help getting off and on, but I am determined to keep

riding because I feel " normal " doing it lol). If you

have grandchildren, focus on them, and being with your

family. The house can wait. Try to cook things that

you can portion up and freeze part so that the next

time you don't feel up to cooking, you have freezer

ready dinners. This disease causes us to adapt and

accept limitations, but does not cause us to stop

living.

I am sorry this has gone on so long - I can be quite

the rambler when I get going, and my hand, even though

still bandaged up, is feeling better, so I am back at

it! Anyway, just wanted to let you know that you are

not alone, and we are here to support you in any way w

can. Has your doctor started you on any meds or

discussed any with you? Aggressive and quick

treatment is the best way to treat RA - a DMARD,

disease modifying drug is must!

Take care - hope you made it all the way through this

novella! Hang in there -

Kathe in CA

--- tomkatsdox <tomkatdox@...> wrote:

> Hi. I'm new to the group. I was just diagnosed

> with RA a few months

> ago (finally). It's kind of a relief just to know

> what the heck is

> going on with my body. I've been feeling like I

> must be the laziest

> person on earth. Normal housework is just about

> beyond me. I'm still

> trying to adjust to this exhausted, lumpy, hurting

> self, and figure

> out what I can and can't do. And I don't think my

> husband (of 33

> yrs.) gets it.

>

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Kathe, Thanks for the excellent suggestions. It's really a relief

just to " talk " to other people who understand this condition. I

show dachshunds, and have been having trouble getting up and down on

my knees in the show ring. And since my hands are really affected,

the grooming is difficult also. So I have had to down size the

number of dogs I can care for. I just participated in my last Field

Trial last weekend. I just cannot run all over a rough field after

bunnies and dogs any more. That makes me a little sad.

I started Methatrexate, and am feeling some better. Also, I've

found that I feel a little better all day if I take the time to do

some good stretches before leaving bed.

Kathy B. (tomkatsdox)

>

> > Hi. I'm new to the group. I was just diagnosed

> > with RA a few months

> > ago (finally). It's kind of a relief just to know

> > what the heck is

> > going on with my body. I've been feeling like I

> > must be the laziest

> > person on earth. Normal housework is just about

> > beyond me. I'm still

> > trying to adjust to this exhausted, lumpy, hurting

> > self, and figure

> > out what I can and can't do. And I don't think my

> > husband (of 33

> > yrs.) gets it.

> >

> >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>