Re: Newcomers and support, long story Joyce,

[Guest guest]

about the priorities- etc.

UG, I have been on my own since age 12. I have bipolar disorder and I guess my

mom could not deal with me, so she gave me the boot....so from age 12 I worked

and worked etc. At 30 I married and began having kids, but alas, my husband got

very ill, so well, I was not making lots of money, so I always had to work lots

of hours. (being bipolar helped, I ran hypomanic and never ever slept more than

3 hours a nite)

well, I decided to go to nursing school finally, I had saved up enough money

waiting tables and being a nurses aide, in between my sick husband and 2 of 3

kids are also disabled.

Whew, I loved nursing school, BUT uh oh, something was wrong with ME.

It turned out to be RA......and it whacked me HARD. Oh but after so many many

years of me always thinking OK I will just work yet another shift nevermind I

just did 2 shifts----Oh how I panicked. How would I feed my kids, what was I

gonna do? Well, I got sicker and sicker and sicker, still

It became apparent that financially supporting us was not such a big question as

was how was I gonna live thru this? Me, who had been always ever ready to work

more hours, invest more of my energies and efforts- that always made everything

better- it was not working, I could no longer do that- and yikes, who was gonna

take care of my husband and disabled kids? and what were we gonna live on?

I applied for social security disability, and wound up learning how to live on

LOTS less income, but I was alive, and for a change I was home, not at work.

I cannot imagine trying to work as sick as I still am so often.....BUT my

husband and kids have blossomed having me home. We have learned to not care if

beds are made of floors are washed.we have learned to shop at thrift stores and

rent a movie now and then.....and we have learned we love being together.

Our life has changed dramatically, but it has not all been bad. My kids now

have mom here at home.

- In , " JANE " <janeatregis@y...> wrote:

>

>

> Joyce, I am one of those people that takes a two by four between the

> eyes to get my attention. God has really used the RA, etc. to make me

> slow down and get my priorities right, and take a look at what is

> important, and what was just " going through the motions " so to speak.

> Like the Grateful Dead said, at time it has been a long, strange

> trip, but one that I wouldn't change for the world. There are a lot

> of wonderful people in this close-knit group, who genuinely care for

> each other. I have received so much " on-target " medical info, along

> with so much love, in this group. Welcome, and God bless you. Tawny,

> glad to see you chipper again, honey. (((hug))))

> Hugs from Texas

> Jane

>

> > >

> > > Hi Latisha and Jpey and Everyone,

> > >

> > > I'm new here also, and I also joined the Lupies. It's been over

> 2

> > years

> > > that I have had aching hands, and

> > > fatigue. When I originally went to my family doc, a great guy,

> he

> > > immediately sent me to a rheumy for

> > > the aching hands...I went, but only saw the rheumy's nurse and

> she

> > jumped

> > > in and said I have RA or Lupus

> > > and I should start taking this, that and the other thing (I was

> > already on

> > > celebrex)...I was scared to death

> > > as all this info came out of the blue. I thought my family doc

> > thought I

> > > had a bit of osteoarthritis in my hands

> > > because of a previous injury to my right, and I used to play the

> > flute (in

> > > jr high 30 years ago). She frightened

> > > me so badly that my hands and feet clammed up - so when she

> > examined me she

> > > said I have Reynauds also.

> > > I nodded like Ralphie did on Santa's lap when he couldn't

> remember

> > he

> > > wanted a Red Ryder BB gun...uh, huh...

> > > while my mind was screaming, " I AM SO OUTTA HERE!! " I left

> without

> > saying

> > > yes to anything, just that I'd think

> > > about it. She looked at me like I was stupid and pathetic. I've

> > worked in

> > > Biochemistry for 25 years, and while

> > > not a chemist, I know enough about things, and the guys who found

> > the basis

> > > for the COX2 enzyme (that vioxx,

> > > celebrex, bextra are based on) are from my department.

> > >

> > > Fast forward 2 years. I kept taking celebrex but my hands still

> > ached. Got

> > > real tired in the summer and the

> > > family doc ordered blood tests. Anemic. I have to add that 2

> years

> > > previous, and again this summer, my

> > > ANA titer was 1:40 and speckled...some consider that negative for

> > > inflammatory disease. He sent me to

> > > a gastroenterologist and there's nothing going on from top to

> > bottom that

> > > would make me anemic (and I had a

> > > hysterectomy in '93, not total, though). The gastro, real nice,

> > gently

> > > suggested going back to the rheumy last

> > > month. I said I prefer to be an ostrich with my head in the sand

> > (is it

> > > the ostrich?haha)...she said OK, but I'm here

> > > if you need me. Two weeks later I was getting killer headaches

> > lasting 3

> > > days that even tylenol with codeine

> > > didn't budge. Went back to my family doc and his PA (who's cool)

> > said,

> > > well, I really think you need to see a

> > > rheumy. So I said if 3 or 4 people tell you it's a tree, it's

> > probably a

> > > tree.

> > >

> > > Went back to rheumy, NOT his nurse. He was nice, dry sense of

> > humor, and we

> > > agreed together that I would

> > > take Plaquenil, Bextra instead of the celebrex, and a short-term

> > dose of

> > > Prednisone along with water therapy.

> > > I have to add that over thanksgiving, hubby and I drove to

> Florida

> > to see

> > > his folks. When we got back to

> > > Michigan, my hips and knees were achy for longer than I would

> have

> > > expected. A new wrinkle for this 45

> > > year old.

> > >

> > > It's been 2 weeks that I've been on meds, almost 3. Two weeks of

> > water

> > > therapy, 3x a week. Gotta say I feel

> > > better. The hand and arm exercised in the water really help

> > strengthen the

> > > muscles to put less pressure on the

> > > joints and tendons. I don't know if it's RA or lupus, they're

> > still

> > > treated the same at first. I did go and get some

> > > blood work results the rheumy took on Dec. 9th - my ANA titer is

> > now

> > > 1:160. My knees buckled and I felt

> > > like throwing up. My denial was coming apart.

> > >

> > > It's still a roller coaster. My husband doesn't talk about it

> and

> > like

> > > jpey, I have 2 kids - a son who's supposed to

> > > graduate this year and a daughter who's a junior at MSU living at

> > > home. Full time job and part time youth director

> > > at our church. Trying to simplify...

> > >

> > > God bless all of you and take care of yourselves today. It took

> > something

> > > like this to make me stop and take

> > > care of myself for the first time in my life...and I wonder if

> > that's part

> > > of the reason I have it??? Anyone else feel

> > > this way?

> > > Joyce in MI

[Guest guest]

about the priorities- etc.

UG, I have been on my own since age 12. I have bipolar disorder and I guess my

mom could not deal with me, so she gave me the boot....so from age 12 I worked

and worked etc. At 30 I married and began having kids, but alas, my husband got

very ill, so well, I was not making lots of money, so I always had to work lots

of hours. (being bipolar helped, I ran hypomanic and never ever slept more than

3 hours a nite)

well, I decided to go to nursing school finally, I had saved up enough money

waiting tables and being a nurses aide, in between my sick husband and 2 of 3

kids are also disabled.

Whew, I loved nursing school, BUT uh oh, something was wrong with ME.

It turned out to be RA......and it whacked me HARD. Oh but after so many many

years of me always thinking OK I will just work yet another shift nevermind I

just did 2 shifts----Oh how I panicked. How would I feed my kids, what was I

gonna do? Well, I got sicker and sicker and sicker, still

It became apparent that financially supporting us was not such a big question as

was how was I gonna live thru this? Me, who had been always ever ready to work

more hours, invest more of my energies and efforts- that always made everything

better- it was not working, I could no longer do that- and yikes, who was gonna

take care of my husband and disabled kids? and what were we gonna live on?

I applied for social security disability, and wound up learning how to live on

LOTS less income, but I was alive, and for a change I was home, not at work.

I cannot imagine trying to work as sick as I still am so often.....BUT my

husband and kids have blossomed having me home. We have learned to not care if

beds are made of floors are washed.we have learned to shop at thrift stores and

rent a movie now and then.....and we have learned we love being together.

Our life has changed dramatically, but it has not all been bad. My kids now

have mom here at home.

- In , " JANE " <janeatregis@y...> wrote:

>

>

> Joyce, I am one of those people that takes a two by four between the

> eyes to get my attention. God has really used the RA, etc. to make me

> slow down and get my priorities right, and take a look at what is

> important, and what was just " going through the motions " so to speak.

> Like the Grateful Dead said, at time it has been a long, strange

> trip, but one that I wouldn't change for the world. There are a lot

> of wonderful people in this close-knit group, who genuinely care for

> each other. I have received so much " on-target " medical info, along

> with so much love, in this group. Welcome, and God bless you. Tawny,

> glad to see you chipper again, honey. (((hug))))

> Hugs from Texas

> Jane

>

> > >

> > > Hi Latisha and Jpey and Everyone,

> > >

> > > I'm new here also, and I also joined the Lupies. It's been over

> 2

> > years

> > > that I have had aching hands, and

> > > fatigue. When I originally went to my family doc, a great guy,

> he

> > > immediately sent me to a rheumy for

> > > the aching hands...I went, but only saw the rheumy's nurse and

> she

> > jumped

> > > in and said I have RA or Lupus

> > > and I should start taking this, that and the other thing (I was

> > already on

> > > celebrex)...I was scared to death

> > > as all this info came out of the blue. I thought my family doc

> > thought I

> > > had a bit of osteoarthritis in my hands

> > > because of a previous injury to my right, and I used to play the

> > flute (in

> > > jr high 30 years ago). She frightened

> > > me so badly that my hands and feet clammed up - so when she

> > examined me she

> > > said I have Reynauds also.

> > > I nodded like Ralphie did on Santa's lap when he couldn't

> remember

> > he

> > > wanted a Red Ryder BB gun...uh, huh...

> > > while my mind was screaming, " I AM SO OUTTA HERE!! " I left

> without

> > saying

> > > yes to anything, just that I'd think

> > > about it. She looked at me like I was stupid and pathetic. I've

> > worked in

> > > Biochemistry for 25 years, and while

> > > not a chemist, I know enough about things, and the guys who found

> > the basis

> > > for the COX2 enzyme (that vioxx,

> > > celebrex, bextra are based on) are from my department.

> > >

> > > Fast forward 2 years. I kept taking celebrex but my hands still

> > ached. Got

> > > real tired in the summer and the

> > > family doc ordered blood tests. Anemic. I have to add that 2

> years

> > > previous, and again this summer, my

> > > ANA titer was 1:40 and speckled...some consider that negative for

> > > inflammatory disease. He sent me to

> > > a gastroenterologist and there's nothing going on from top to

> > bottom that

> > > would make me anemic (and I had a

> > > hysterectomy in '93, not total, though). The gastro, real nice,

> > gently

> > > suggested going back to the rheumy last

> > > month. I said I prefer to be an ostrich with my head in the sand

> > (is it

> > > the ostrich?haha)...she said OK, but I'm here

> > > if you need me. Two weeks later I was getting killer headaches

> > lasting 3

> > > days that even tylenol with codeine

> > > didn't budge. Went back to my family doc and his PA (who's cool)

> > said,

> > > well, I really think you need to see a

> > > rheumy. So I said if 3 or 4 people tell you it's a tree, it's

> > probably a

> > > tree.

> > >

> > > Went back to rheumy, NOT his nurse. He was nice, dry sense of

> > humor, and we

> > > agreed together that I would

> > > take Plaquenil, Bextra instead of the celebrex, and a short-term

> > dose of

> > > Prednisone along with water therapy.

> > > I have to add that over thanksgiving, hubby and I drove to

> Florida

> > to see

> > > his folks. When we got back to

> > > Michigan, my hips and knees were achy for longer than I would

> have

> > > expected. A new wrinkle for this 45

> > > year old.

> > >

> > > It's been 2 weeks that I've been on meds, almost 3. Two weeks of

> > water

> > > therapy, 3x a week. Gotta say I feel

> > > better. The hand and arm exercised in the water really help

> > strengthen the

> > > muscles to put less pressure on the

> > > joints and tendons. I don't know if it's RA or lupus, they're

> > still

> > > treated the same at first. I did go and get some

> > > blood work results the rheumy took on Dec. 9th - my ANA titer is

> > now

> > > 1:160. My knees buckled and I felt

> > > like throwing up. My denial was coming apart.

> > >

> > > It's still a roller coaster. My husband doesn't talk about it

> and

> > like

> > > jpey, I have 2 kids - a son who's supposed to

> > > graduate this year and a daughter who's a junior at MSU living at

> > > home. Full time job and part time youth director

> > > at our church. Trying to simplify...

> > >

> > > God bless all of you and take care of yourselves today. It took

> > something

> > > like this to make me stop and take

> > > care of myself for the first time in my life...and I wonder if

> > that's part

> > > of the reason I have it??? Anyone else feel

> > > this way?

> > > Joyce in MI

[Guest guest]

I guess we've all had to do " so much with so little for so long, we

can do anything with nothing! " I must admit even if I had money, I

would still love thrift stores, junk shops, etc. I was quite the

clothes horse in my younger days...but love a good bargain!

I think having mom at home makes up for a whole lot. My mother was

terribly crippled with RA, a stay at home mom- (retired LPN psych

nurse) she was the best mom ever. I am sure heaven is way more fun

since she got there. I'm a single mom so always had to work no matter

what- I went back to work the week after a 3 level fusion one time!

Not that I would recommend that to anyone.....I think some of our

best times were when we had the least " Stuff. " I admire you for

keepin' on keepin' on, in the face of what sounds like some real hard

times and challenges. God bless you & your DH and babies.

Hugs

jane

> > > >

> > > > Hi Latisha and Jpey and Everyone,

> > > >

> > > > I'm new here also, and I also joined the Lupies. It's been

over

> > 2

> > > years

> > > > that I have had aching hands, and

> > > > fatigue. When I originally went to my family doc, a great

guy,

> > he

> > > > immediately sent me to a rheumy for

> > > > the aching hands...I went, but only saw the rheumy's nurse

and

> > she

> > > jumped

> > > > in and said I have RA or Lupus

> > > > and I should start taking this, that and the other thing (I

was

> > > already on

> > > > celebrex)...I was scared to death

> > > > as all this info came out of the blue. I thought my family

doc

> > > thought I

> > > > had a bit of osteoarthritis in my hands

> > > > because of a previous injury to my right, and I used to play

the

> > > flute (in

> > > > jr high 30 years ago). She frightened

> > > > me so badly that my hands and feet clammed up - so when she

> > > examined me she

> > > > said I have Reynauds also.

> > > > I nodded like Ralphie did on Santa's lap when he couldn't

> > remember

> > > he

> > > > wanted a Red Ryder BB gun...uh, huh...

> > > > while my mind was screaming, " I AM SO OUTTA HERE!! " I left

> > without

> > > saying

> > > > yes to anything, just that I'd think

> > > > about it. She looked at me like I was stupid and pathetic.

I've

> > > worked in

> > > > Biochemistry for 25 years, and while

> > > > not a chemist, I know enough about things, and the guys who

found

> > > the basis

> > > > for the COX2 enzyme (that vioxx,

> > > > celebrex, bextra are based on) are from my department.

> > > >

> > > > Fast forward 2 years. I kept taking celebrex but my hands

still

> > > ached. Got

> > > > real tired in the summer and the

> > > > family doc ordered blood tests. Anemic. I have to add that 2

> > years

> > > > previous, and again this summer, my

> > > > ANA titer was 1:40 and speckled...some consider that negative

for

> > > > inflammatory disease. He sent me to

> > > > a gastroenterologist and there's nothing going on from top to

> > > bottom that

> > > > would make me anemic (and I had a

> > > > hysterectomy in '93, not total, though). The gastro, real

nice,

> > > gently

> > > > suggested going back to the rheumy last

> > > > month. I said I prefer to be an ostrich with my head in the

sand

> > > (is it

> > > > the ostrich?haha)...she said OK, but I'm here

> > > > if you need me. Two weeks later I was getting killer

headaches

> > > lasting 3

> > > > days that even tylenol with codeine

> > > > didn't budge. Went back to my family doc and his PA (who's

cool)

> > > said,

> > > > well, I really think you need to see a

> > > > rheumy. So I said if 3 or 4 people tell you it's a tree,

it's

> > > probably a

> > > > tree.

> > > >

> > > > Went back to rheumy, NOT his nurse. He was nice, dry sense of

> > > humor, and we

> > > > agreed together that I would

> > > > take Plaquenil, Bextra instead of the celebrex, and a short-

term

> > > dose of

> > > > Prednisone along with water therapy.

> > > > I have to add that over thanksgiving, hubby and I drove to

> > Florida

> > > to see

> > > > his folks. When we got back to

> > > > Michigan, my hips and knees were achy for longer than I would

> > have

> > > > expected. A new wrinkle for this 45

> > > > year old.

> > > >

> > > > It's been 2 weeks that I've been on meds, almost 3. Two

weeks of

> > > water

> > > > therapy, 3x a week. Gotta say I feel

> > > > better. The hand and arm exercised in the water really help

> > > strengthen the

> > > > muscles to put less pressure on the

> > > > joints and tendons. I don't know if it's RA or lupus,

they're

> > > still

> > > > treated the same at first. I did go and get some

> > > > blood work results the rheumy took on Dec. 9th - my ANA titer

is

> > > now

> > > > 1:160. My knees buckled and I felt

> > > > like throwing up. My denial was coming apart.

> > > >

> > > > It's still a roller coaster. My husband doesn't talk about

it

> > and

> > > like

> > > > jpey, I have 2 kids - a son who's supposed to

> > > > graduate this year and a daughter who's a junior at MSU

living at

> > > > home. Full time job and part time youth director

> > > > at our church. Trying to simplify...

> > > >

> > > > God bless all of you and take care of yourselves today. It

took

> > > something

> > > > like this to make me stop and take

> > > > care of myself for the first time in my life...and I wonder

if

> > > that's part

> > > > of the reason I have it??? Anyone else feel

> > > > this way?

> > > > Joyce in MI

[Guest guest]

I guess we've all had to do " so much with so little for so long, we

can do anything with nothing! " I must admit even if I had money, I

would still love thrift stores, junk shops, etc. I was quite the

clothes horse in my younger days...but love a good bargain!

I think having mom at home makes up for a whole lot. My mother was

terribly crippled with RA, a stay at home mom- (retired LPN psych

nurse) she was the best mom ever. I am sure heaven is way more fun

since she got there. I'm a single mom so always had to work no matter

what- I went back to work the week after a 3 level fusion one time!

Not that I would recommend that to anyone.....I think some of our

best times were when we had the least " Stuff. " I admire you for

keepin' on keepin' on, in the face of what sounds like some real hard

times and challenges. God bless you & your DH and babies.

Hugs

jane

> > > >

> > > > Hi Latisha and Jpey and Everyone,

> > > >

> > > > I'm new here also, and I also joined the Lupies. It's been

over

> > 2

> > > years

> > > > that I have had aching hands, and

> > > > fatigue. When I originally went to my family doc, a great

guy,

> > he

> > > > immediately sent me to a rheumy for

> > > > the aching hands...I went, but only saw the rheumy's nurse

and

> > she

> > > jumped

> > > > in and said I have RA or Lupus

> > > > and I should start taking this, that and the other thing (I

was

> > > already on

> > > > celebrex)...I was scared to death

> > > > as all this info came out of the blue. I thought my family

doc

> > > thought I

> > > > had a bit of osteoarthritis in my hands

> > > > because of a previous injury to my right, and I used to play

the

> > > flute (in

> > > > jr high 30 years ago). She frightened

> > > > me so badly that my hands and feet clammed up - so when she

> > > examined me she

> > > > said I have Reynauds also.

> > > > I nodded like Ralphie did on Santa's lap when he couldn't

> > remember

> > > he

> > > > wanted a Red Ryder BB gun...uh, huh...

> > > > while my mind was screaming, " I AM SO OUTTA HERE!! " I left

> > without

> > > saying

> > > > yes to anything, just that I'd think

> > > > about it. She looked at me like I was stupid and pathetic.

I've

> > > worked in

> > > > Biochemistry for 25 years, and while

> > > > not a chemist, I know enough about things, and the guys who

found

> > > the basis

> > > > for the COX2 enzyme (that vioxx,

> > > > celebrex, bextra are based on) are from my department.

> > > >

> > > > Fast forward 2 years. I kept taking celebrex but my hands

still

> > > ached. Got

> > > > real tired in the summer and the

> > > > family doc ordered blood tests. Anemic. I have to add that 2

> > years

> > > > previous, and again this summer, my

> > > > ANA titer was 1:40 and speckled...some consider that negative

for

> > > > inflammatory disease. He sent me to

> > > > a gastroenterologist and there's nothing going on from top to

> > > bottom that

> > > > would make me anemic (and I had a

> > > > hysterectomy in '93, not total, though). The gastro, real

nice,

> > > gently

> > > > suggested going back to the rheumy last

> > > > month. I said I prefer to be an ostrich with my head in the

sand

> > > (is it

> > > > the ostrich?haha)...she said OK, but I'm here

> > > > if you need me. Two weeks later I was getting killer

headaches

> > > lasting 3

> > > > days that even tylenol with codeine

> > > > didn't budge. Went back to my family doc and his PA (who's

cool)

> > > said,

> > > > well, I really think you need to see a

> > > > rheumy. So I said if 3 or 4 people tell you it's a tree,

it's

> > > probably a

> > > > tree.

> > > >

> > > > Went back to rheumy, NOT his nurse. He was nice, dry sense of

> > > humor, and we

> > > > agreed together that I would

> > > > take Plaquenil, Bextra instead of the celebrex, and a short-

term

> > > dose of

> > > > Prednisone along with water therapy.

> > > > I have to add that over thanksgiving, hubby and I drove to

> > Florida

> > > to see

> > > > his folks. When we got back to

> > > > Michigan, my hips and knees were achy for longer than I would

> > have

> > > > expected. A new wrinkle for this 45

> > > > year old.

> > > >

> > > > It's been 2 weeks that I've been on meds, almost 3. Two

weeks of

> > > water

> > > > therapy, 3x a week. Gotta say I feel

> > > > better. The hand and arm exercised in the water really help

> > > strengthen the

> > > > muscles to put less pressure on the

> > > > joints and tendons. I don't know if it's RA or lupus,

they're

> > > still

> > > > treated the same at first. I did go and get some

> > > > blood work results the rheumy took on Dec. 9th - my ANA titer

is

> > > now

> > > > 1:160. My knees buckled and I felt

> > > > like throwing up. My denial was coming apart.

> > > >

> > > > It's still a roller coaster. My husband doesn't talk about

it

> > and

> > > like

> > > > jpey, I have 2 kids - a son who's supposed to

> > > > graduate this year and a daughter who's a junior at MSU

living at

> > > > home. Full time job and part time youth director

> > > > at our church. Trying to simplify...

> > > >

> > > > God bless all of you and take care of yourselves today. It

took

> > > something

> > > > like this to make me stop and take

> > > > care of myself for the first time in my life...and I wonder

if

> > > that's part

> > > > of the reason I have it??? Anyone else feel

> > > > this way?

> > > > Joyce in MI