Loved ones and our illness

[Guest guest]

I just wanted to say that my oldest son tries to avoid me talking

about my illness because he doesn't know how to handle it. I asked

him one day why he changes the subject when I talk to him about it.

(I want him informed and know what is going on and I feel he is old

enough to understand since he is 23 and I wouldn't want something to

happen down the road and he wonder why no one ever told him things

could get bad)He said " mom I don't want to think about any bad that

may or may not happen to you. I just can't handle it "

Anyway I am sharing this because it made me realize that could be why

a lot of our loved ones avoid us or the situation because they don't

know how to handle it. I know it seems very shallow and cruel and it

is but after he told me this I started looking at things from the

other persons side of it. As wrong as it is, its easier for them to

avoid it than deal with it since they just don't know how to deal

with it. Yes there are also the shallow people who don't want to be

inconvenienced by our situation. I have a good friend who lives out

of state and is a nurse practitioner. We have had it out on several

occasions because she thinks I can just take a bunch of meds and it

will fix everything and that I need to " get over it " . Well I am

taking everything I am suppose to and I would love to give her this

dang crap for just 24 hours and watch her change her tune. But with

a medical mind she thinks everything can be fixed and if it isn't

getting fixed it is because we aren't doing something right. Well in

the last year I have knocked her down a few notches and she don't

like the realization. She had been having bad neck pain for a few

months from stress and she was complaining about it. I asked her

what she was whinning about. That she needed to take some muscle

relaxers and get over it. She said " you don't understand, I have to

work and this is something that should be going away. " I said " oh

and you don't think those of us with autoimmune diseases don't feel

the same? We feel like this crap should go away too. You only have

to deal with this for a few months. Think if you had to accept that

you had it for life. " She got real quiet and now she never talks to

me about her pain ever. LOL I normally would never be that

insensitive to someone but she deserved it and it was the only way to

make her understand.

> > >

> >

> > Hi Jolene and Tammy and other mums out there,

> >

> > It is so good to be able to read posts from mothers suffering

from

> > the same illnesses. It doesn't make me feel so alone. I like you

> > all out there, grieve the life I once had before I was struck

down

> > with illness.

> >

> > But I try and be postitive and keep my sense of humour, because

> > without that I think I would get very depressed.

> >

> > Raising children with a disability is a real challenge and I do

> know

> > that my youngest daughter who has been at home the longest with

me

> > and seen the disabiling affects it has on my life,has so much

> > compassion and more understanding than others who don't see what

> > goes on behind closed doors.

> >

> > I was told the other day I looked the picture of health !!! I had

> > ventured out of the house to go to karaoke, that I have not done

> in

> > ages because of my ill health. I thought to myself,if only you

> > could see my pain. But that is how it is, if people cannot see

> from

> > the outside they don't understand.

> >

> > Anyway my thoart has been affected by all the medication and my

> > breathing is not too good from the inflamtion around my heart,

but

> I

> > still sang two songs and didn't care if I tortured the crowd. It

> > was my thearapy.!!!

> >

> > Then back home to more pain !!! Life is full of suprises some we

> > don't want but have no choice. So I wish you all and your

families

> > all the best and hope your health improves. Keep persevering and

> > god bless you all.

> >

> > .

> >

> > > Hi im Jolene 43 year old mother of five kids two still at home.

> > I have

> > > ra/psoriatic arthritis, and rsd as well. I take five mtx a week

> > for for now. I

> > > do notice some weeks im couching a lot but i smoke which is

> > really bad. I

> > > also know what its like to raise kids with illness but we are

> > surviving you

> > > can email me anytime. It is a hard thing to deal with, but we

> > have tried to

> > > do what we can to make the kids more independent and i agree

> they

> > have a much

> > > better view of people with disabilities for sure.

> > >

> > > Jolene

> > >

> > >

> > > In a message dated 7/24/2008 6:57:57 P.M. Eastern Daylight

Time,

> > > melyndagamez@ ... writes:

> > >

> > >

> > >

> > >

> > > hi tammy, i'm a38yr.old mother with severe ra,osteo, &

neuropathy.

> > > what more could i possibly ask for?lol!

> > > i too take mtx, plaquenile, prednisone,etc. i too t

> > > i just started having breathing problems around a year ago but

i

> > did not

> > > know what it was,i was scared!!!!

> > > the dr. said i had bad anxiety, i believed other wise...

> > > i mean i was put in the hospital for a week, did breathing

tests

> > etc...

> > > at home i would stop breathing, it scared the hell out of me,

my

> > hub and

> > > 10yr.old daughter,alyssa.

> > > now i know i have problems cuz my rheummy did testing come to

> > find out my

> > > esophagus is closing!!

> > > well i just deal!!!

> > > i know what u mean when u say about keeping up with your

> children.

> > > it's hard, my alyssa has had to deal with alot but one thing i

> > can say &

> > > it's the god's honest truth is she has bcome

> > > a very loving,kind, a very loving,a very loving,kind,

> > > she knows that we're all different in some way or another,no

one

> > is

> > > PERFECT!!!!

> > > god bless,melyndagamez 7/24/08 6p.m.central

> > >

> > > RE: [ ] I'm done with MTX

> > >

> > > I am a former lurker and thought I'd start keeping up with the

> > posts. I was

> > > diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with

> > occasional

> > > times on prednisone. I always feel the best when i'm on

> > prednisone. I'm now

> > > having a bunch of lung problems. Out of breath at the simplest

> > tasks, esp.

> > > steps. I quit taking the MTX while undergoing some lung tests.

> > No pulm.

> > > Hypertension. I see the pulmonologist next month and also my

> > Rheumy. They are

> > > both new doctors (insurance change) and I like them both. I'm

> > hoping to go on

> > > Arava. Any thoughts on the lung issues? I also have neuropathy

> > (no

> > > diabetes). Not sure what else I should have the dr's look for.

> > I'd also like to

> > > know what people think of Arava. By the way, I'm 46 with 3 kids

> > (19, 10, &

> > > 7). I feel bad for my younger ones. I can't keep up with them

> > anymore.

> > >

> > > Have a good day all,

> > > Tammy in Wisconsin

> > > ____________ _________ _________ _________ _________ _________ _

> > > Use video conversation to talk face-to-face with Windows Live

> > Messenger.

> > >

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> > >

> > >