Re: something I have noticed about getting treatmenttawny

[Guest guest]

This is bad- I am a nurse, but- this all is above me. I did nursing home work,

HOspice and ALzheimers mostly and skilled care, lots of MS and strokes- and I am

well versed in mental illnesses- but this RA and Lupus stuff goes right over my

head. These meds are new to me- mobility issues are not new- but- most of my

patients did not having - um- changing mobility. I mean gosh one day my feet

are flaring, another day it is knees, another day toes, another day fingers,

another day elbows- LOL, it is a challenge to figure out each day how to adapt.

I began writing holding my pen one way but a week later it was a different part

of my thumbs flaring than the week before- even tho it was still my thumbs.

LOL- SOme days the kids will help pull me up from sitting and some days-

depending on whats flaring I tell them NO! do not let me hold on, it will hurt

more.

I have been humbled, LOL- cuz I got used to knowing what I was talking about and

knowing terms, but right now, I am still so unknowledgeable about this. Thank

you guys for helping me learn! Now if I could keep the rest of the families

crisises at bay long enough for anything to sink in, LOL.

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

> I was also diagnosed with Lupus and RA. I was asking Janie the other

> day about it. She was saying the doctor took her off the Humira,

> because of the Lupus diagnose. That scared me because I'm on Humira,

> and suppose to have Lupus. So, I am going to talk to my doc on my

> next visit. I am not good with medical terms at all.

> You have really had so much going on in your family, I'm so sorry

> dear. I will keep you, and your family in my prayers, 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]

It is hard to figure out, isn't it? My family don't understand

either, I will be down with my leg one day, and my neck the next. I

sometimes wonder what they think,lol

I go through the same thing, sometimes I just can't hardly stand to

be touched. My husband has a bad habit grabbing my fingers, and I

wail in pain, and he don't think I hurt that bad.

This disease is a bit of a mystery to me, hope one day I will know

more, 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]

It really is weird, and sometimes things feel better kinda quickly and out of

the blue and I am hobbling one hour and walking great later. Yeah people look

at me like - hm you had to be faking.

I do know my own family of origin DID really decide I was faking. They did not

like it when I got too sick to be at their beck and call so much-and I think

this illness made me have too little patience to deal with them anymore. Even

my friends with MS get funny with me.

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

> It is hard to figure out, isn't it? My family don't understand

> either, I will be down with my leg one day, and my neck the next. I

> sometimes wonder what they think,lol

> I go through the same thing, sometimes I just can't hardly stand to

> be touched. My husband has a bad habit grabbing my fingers, and I

> wail in pain, and he don't think I hurt that bad.

> This disease is a bit of a mystery to me, hope one day I will know

> more, 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]

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?

>

>

>

>