Re: something I have noticed about getting mike again

[Guest guest]

any jars or pop bottles i have to ask my wife to open for me. becuse i don't

have the grip to open them any more. it's hell to be limited . and just to think

it will only get worse is depressing . makes you just want to sit down and cry.

but we got to keep on pushing on. mike

dreamer_plus <dreamer_plus@...> wrote:my mom told me I should be

embarrassed to ask my kids to help me comb my hair. My friend with MS says gosh

why use a scooter? I told my mom well thekids would be MORE embarrassed if I

ran around ungroomed just cuz it is too hard for me to do it alone- and I told

my friend gosh I do not want to always stay home- I am too young! I still LIKE

to go places- the scooter lets me. My kids are not embarassed by my scoooetr,

they LOVE it! My little guy hangs on the back, and the older ones load me down

to carry everything, LOL. SOmeone actually told me gosh if you really are sick

STAY home. I was like HUH? gosh there is just too much living I want to do- so

wwhat I am slow. SO what I now wear pull over my head dresses or dresses that

snap up the front for ease- or I plop silly hats on my head cuz it is easier

than trying to reach my hair or holding a comb- hey I get to go all kinds of

places again with my scooter!

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

> Hi Mike,

>

> I know what you mean, I get really tired of explaining to people

> about my RA, and my limitations. Their like, you don't look sick, so

> I guess they think I'm faking when I limp.

> Then the handicap parking, oh I dread it everytime I go to the store,

> isn't that terrible that we have to feel that way?

> I wrote to the newspaper about trying to educate the people here in

> Oklahoma City, because some people have no clue to what rheumatoid

> arthritis, except it's a old person's disease. I have not had a

> reply yet, probably won't.

> As for my husband, he doesn't have very much sympathy for me. I just

> deal with it on my own, I get so depressed about it. I am not the

> same anymore, and so I get tired of trying to be. It's like I'm

> tired of trying to keep up with everyone, cause I'm getting slower.

> He comes home all hyper, and thinks I should be OK, and I'm not.

> Thanks so much for your understanding, I need it, Tawny

>

>

>

>

>

>

>

>

> > > > > The docs where I live are not at all aggressive in ordering

> > tests

> > > > for people. M frind lost an eye to cancer, she has MS and for

> 4

> > > > years the docs blamed her vision complaints on MS. FINALLY she

> > got

> > > > an ultrasound on her eye and they found very advanced eye

> > cancer.

> > > > (she is in early 30s) - they had to remove her eye. My son was

> > > > exposed to meds that can cause spina bifida during my pregnncy

> > with

> > > > him- my husband also is documented Agent Orange exposed- heavy

> > > > exposure- which also can cause spina bifida, - he was 2 months

> > > > preemie, and his labor was especially long with him in fetal

> > distress-

> > > > BUT even when he could not toilet train, even with an in home

> > > > behavior modification PHD coming to our house daily- even with

> > him

> > > > not being able to lern to ride a bike, even with him toe

> walking-

> >

> > > > and having a hemangioma (classic signs of spina bifida) we

> could

> > not

> > > > get any of the local pediatricians to check him out. (we wound

> > up

> > > > referring ourself to SHriners and THEY found brain damage and

> > seizure

> > > > disorders)

> > > > > I cannot even tell you how many times I was in clinic, docs

> > office

> > > > and ER with RA symptoms, and what would they say? You are

> > bipolar,

> > > > are you upset? DId you hit something? Did you fall? Did you

> > jump

> > > > from somewhere and hurt yourself, causing this?

> > > > > A friend of mines child died when our ER refused to examine

> > their

> > > > child, he had a twisted bowel that ruptured upon discharge from

> > ER.

> > > > My husband had a motorcycle accident, ambulance too him in from

> > the

> > > > scene. Local hospital discharged him, I called an ambulance

> that

> > > > took him to a VA hospital and they kept him a MONTH.

> > > > >

> > > > > Now I am wondering- gosh- do I even have RA? Everything I

> read

> > > > tells me this is correct- BUT------ gosh- there are not that

> many

> > > > rheumys around- and already I travel with my osn 6 hours round

> > trip

> > > > to take HIM to a teaching hospital- and I travel 3 hours each

> way

> > to

> > > > take my bipolar daughter to a teaching hospital, and I travel

> 90

> > mins

> > > > each way for my husband VA healthcare----am I going to have to

> > also

> > > > go to the city for MY healthcare? Is anyone else having a hard

> > time

> > > > getting treatment? Tests? I guess I assumed RA was pretty

> much

> > > > concrete, cut and dried for dx and treatment. AM I wrong?

> >

> >

> >

> >

[Guest guest]

Mike, We can only do the best that we can, I know how hard it is for

you. It's great that you have a caring wife to be by your side.

Just take each day at a time, and make the best of it, big hugs Tawny

> > > > > > The docs where I live are not at all aggressive in

ordering

> > > tests

> > > > > for people. M frind lost an eye to cancer, she has MS and

for

> > 4

> > > > > years the docs blamed her vision complaints on MS. FINALLY

she

> > > got

> > > > > an ultrasound on her eye and they found very advanced eye

> > > cancer.

> > > > > (she is in early 30s) - they had to remove her eye. My son

was

> > > > > exposed to meds that can cause spina bifida during my

pregnncy

> > > with

> > > > > him- my husband also is documented Agent Orange exposed-

heavy

> > > > > exposure- which also can cause spina bifida, - he was 2

months

> > > > > preemie, and his labor was especially long with him in

fetal

> > > distress-

> > > > > BUT even when he could not toilet train, even with an in

home

> > > > > behavior modification PHD coming to our house daily- even

with

> > > him

> > > > > not being able to lern to ride a bike, even with him toe

> > walking-

> > >

> > > > > and having a hemangioma (classic signs of spina bifida) we

> > could

> > > not

> > > > > get any of the local pediatricians to check him out. (we

wound

> > > up

> > > > > referring ourself to SHriners and THEY found brain damage

and

> > > seizure

> > > > > disorders)

> > > > > > I cannot even tell you how many times I was in clinic,

docs

> > > office

> > > > > and ER with RA symptoms, and what would they say? You are

> > > bipolar,

> > > > > are you upset? DId you hit something? Did you fall? Did

you

> > > jump

> > > > > from somewhere and hurt yourself, causing this?

> > > > > > A friend of mines child died when our ER refused to

examine

> > > their

> > > > > child, he had a twisted bowel that ruptured upon discharge

from

> > > ER.

> > > > > My husband had a motorcycle accident, ambulance too him in

from

> > > the

> > > > > scene. Local hospital discharged him, I called an

ambulance

> > that

> > > > > took him to a VA hospital and they kept him a MONTH.

> > > > > >

> > > > > > Now I am wondering- gosh- do I even have RA? Everything

I

> > read

> > > > > tells me this is correct- BUT------ gosh- there are not

that

> > many

> > > > > rheumys around- and already I travel with my osn 6 hours

round

> > > trip

> > > > > to take HIM to a teaching hospital- and I travel 3 hours

each

> > way

> > > to

> > > > > take my bipolar daughter to a teaching hospital, and I

travel

> > 90

> > > mins

> > > > > each way for my husband VA healthcare----am I going to have

to

> > > also

> > > > > go to the city for MY healthcare? Is anyone else having a

hard

> > > time

> > > > > getting treatment? Tests? I guess I assumed RA was pretty

> > much

> > > > > concrete, cut and dried for dx and treatment. AM I wrong?

> > >

> > >

> > >

> > >