Re: thanks for the welcome!

[Guest guest]

Hi again Joyce. I'm a retired inorganic/radiochemist, 77 years old, with RA for 3 years. I'm sorry your husband seems so reluctant to learn about RA and related diseases. I can understand his lack of knowledge about it. Before I got it I thought there as only one kind of arthritis and that it only got worse. When I first got it, I heard it was an autoimmune disease and immediately thought of AIDS. It took me a while to realize that there was no similarity at all. Now I realize that there are over 170 different kinds of arthritis with Osteoarthritis being by far the most common, followed by Rheumatoid Arthritis. Also most people with RA lead pretty much normal lives once they find the right combination of medicines for them. For some there is a tradeoff between controlling RA and dealing with the side effects of medicines, and for a few they have not yet found the right combination of medicines. Of course, some get permanent joint damage before being treated correctly and have to live with that. However, the most likely scenario with prompt and aggressive treatment is to live a pretty normal life without any severe limitations because of RA. Also new medicines are being developed and tested that promise to give relief for those who have not been helped by current medicines.

I don't know if I can help your husband to understand about RA but I would be glad to try if he wants to contact me. Perhaps a male viewpoint would hlep him. hvantuyl@... and include rheumatoid arthritis in the subject line so I actually look at it. God bless.

----- Original Message -----

From: joyce

Rheumatoid Arthritis

Sent: Friday, December 17, 2004 3:22 PM

Subject: thanks for the welcome!

Hi All,Yes, I posted on Tuesday, but I think because I'm new, my posts have to go through a moderator.Since Tuesday, I had a few knocks of reality and I'm not real happy about it. As I mentioned earlier,I have put my head in the sand for the last 2 years. I'm not stupid, or naive, I have even worked inBiochemistry for the last 25 years...but...as all of you can relate...THIS IS MY LIFE. I'm scared.Thank you Harold, and others, for the prayers. I know first hand they work. I am not real happy thatGod thought this auto-immune disease, whatever it ends up being, was a good idea. But I amthankful there are medications and while it is really hard to admit I need a drug to survive, I will do whatI need to do., I'm sorry you have to be on this list, but I'm glad we're the same age! I don't have a "firm" diagnosis,but I am in between Lupus and RA. Thanks for the warning on the Bextra! Oddly enough, two friends of mine,Dave Dewitt and Bill (professors at Michigan State University) discovered the 2 enzyme!! Dave saidVioxx really isn't bad either...you have to realize aspirin comes from the willow tree (salix...) and they removeda lot of the stomach upset from aspirin and left the anti-inflammatory action. Well, many people (me included)are overweight and use these medications for pain - but may have a predisposition to heart disease (I don't).If there are any questions you think I can answer - or direct to the "right" people, I would be happy to. Weneed to support each other...this is scary, and it hurts!, Ibuprofen? Wow, the way the post came across I couldn't tell if it was 4x800mg/daily or 4800 mg daily...sorry. Please let me know, I'll try anything. Also, one of the reasons my rheumy got me to take Plaquenil wasthat it has been around for 50 years...??? Hmmm...On another note, please add prayers again...yesterday when I went to give my rheumy a copy of myinsurance card, I asked for a copy of my blood test results. I was so sure all of this is a big mistake, thatI almost broke out in tears (well, I welled up in tears), when my ANA titer, which has been 1:40 for 2.5 years jumped to1:160 in one month. Does this mean "hello, lupus?" I am scared, sorry. Or is it both?? This sucks, it really does.Please allow me to gripe for a minute - I have done a lot to keep myself healthy, I do a lot for others, I knowabout nutrition and my work and personal life has been hell, and felt I deserved a break. What do I get? A lifechanging disease that I can't talk to my engineer husband about 'cause he is so neurotic and would probably thinkI am dying and DISCONNECT from me, so I just tell him I have arthritis. Is anyone else in this situation? He's agreat guy, but knows nothing about medical issues and always assumes the worst..."Oh, Lupus/RA, when will yoube dead?" I tried to tell him something about it last week and got, "Oh, you mean you need a wheelchair?" I felt likesaying, "Yes, to cart your dead body around." I am sorry if this sounds offensive and these aren't things I verbalizeto my husband, it's just sick mental humor that helps me get by.Thank you for allowing me the long post, and take care everyone!Hugs,Joyce in MI

[Guest guest]

Joyce,

I am a critical care RN with Hashimoto's, RA and Lupus. My ANA is

1:640.

I know this is a terrible blow but the way I keep functional is

that I tell myself that this has been ongoing in my body for quite

some time, and that although the Hashimoto's has had a label for 14

years, the others were only labelled 8 weeks ago.

In reality I knew this was wrong, and I have been waiting for it

to be labelled. Your condition has not changed.....only the label

has.

As for the future, there are research centers all over the world

working on a myriad of autoimmune disorders which are way up on a

world basis. Since we have each been diagnosed fairly early in the

course of our illnesses, it is most likely that the end stage lupus

that you and I have seen in hospitals and has terrified us each, may

well never happen to either of us.

You and I only need to stay positive, seek rational treatment,

rest sufficiently, and eat well, and out survive the destructive

nature of these illnesses. I'll bet that we both can !

Jane

--- In Rheumatoid Arthritis , joyce <robins49@m...>

wrote:

> Hi All,

>

> Yes, I posted on Tuesday, but I think because I'm new, my posts

have to go

> through a moderator.

> Since Tuesday, I had a few knocks of reality and I'm not real happy

about

> it. As I mentioned earlier,

> I have put my head in the sand for the last 2 years. I'm not

stupid, or

> naive, I have even worked in

> Biochemistry for the last 25 years...but...as all of you can

relate...THIS

> IS MY LIFE. I'm scared.

>

> Thank you Harold, and others, for the prayers. I know first hand

they

> work. I am not real happy that

> God thought this auto-immune disease, whatever it ends up being,

was a good

> idea. But I am

> thankful there are medications and while it is really hard to admit

I need

> a drug to survive, I will do what

> I need to do.

>

> , I'm sorry you have to be on this list, but I'm glad we're

the same

> age! I don't have a " firm " diagnosis,

> but I am in between Lupus and RA. Thanks for the warning on the

> Bextra! Oddly enough, two friends of mine,

> Dave Dewitt and Bill (professors at Michigan State

University)

> discovered the 2 enzyme!! Dave said

> Vioxx really isn't bad either...you have to realize aspirin comes

from the

> willow tree (salix...) and they removed

> a lot of the stomach upset from aspirin and left the anti-

inflammatory

> action. Well, many people (me included)

> are overweight and use these medications for pain - but may have a

> predisposition to heart disease (I don't).

> If there are any questions you think I can answer - or direct to

the

> " right " people, I would be happy to. We

> need to support each other...this is scary, and it hurts!

>

> , Ibuprofen? Wow, the way the post came across I couldn't tell

if it

> was 4x800mg/daily or 4800 mg daily...

> sorry. Please let me know, I'll try anything. Also, one of the

reasons my

> rheumy got me to take Plaquenil was

> that it has been around for 50 years...??? Hmmm...

>

> On another note, please add prayers again...yesterday when I went

to give

> my rheumy a copy of my

> insurance card, I asked for a copy of my blood test results. I was

so sure

> all of this is a big mistake, that

> I almost broke out in tears (well, I welled up in tears), when my

ANA

> titer, which has been 1:40 for 2.5 years jumped to

> 1:160 in one month. Does this mean " hello, lupus? " I am scared,

> sorry. Or is it both?? This sucks, it really does.

>

> Please allow me to gripe for a minute - I have done a lot to keep

myself

> healthy, I do a lot for others, I know

> about nutrition and my work and personal life has been hell, and

felt I

> deserved a break. What do I get? A life

> changing disease that I can't talk to my engineer husband

about 'cause he

> is so neurotic and would probably think

> I am dying and DISCONNECT from me, so I just tell him I have

arthritis. Is

> anyone else in this situation? He's a

> great guy, but knows nothing about medical issues and always

assumes the

> worst... " Oh, Lupus/RA, when will you

> be dead? " I tried to tell him something about it last week and

got, " Oh,

> you mean you need a wheelchair? " I felt like

> saying, " Yes, to cart your dead body around. " I am sorry if this

sounds

> offensive and these aren't things I verbalize

> to my husband, it's just sick mental humor that helps me get by.

>

> Thank you for allowing me the long post, and take care everyone!

> Hugs,

> Joyce in MI

[Guest guest]

I'll e-mail you privately, although of course, labwork in these

illnesses is often conflicting and confusing, even to family practice

doctors and other internists. Most of the time the labs have to be

correlated clinically along with the labs by a board certified

rheumatologist. I'll help any way I can though.

Jane

> > Hi All,

> >

> > Yes, I posted on Tuesday, but I think because I'm new, my posts

> have to go

> > through a moderator.

> > Since Tuesday, I had a few knocks of reality and I'm not real

happy

> about

> > it. As I mentioned earlier,

> > I have put my head in the sand for the last 2 years. I'm not

> stupid, or

> > naive, I have even worked in

> > Biochemistry for the last 25 years...but...as all of you can

> relate...THIS

> > IS MY LIFE. I'm scared.

> >

> > Thank you Harold, and others, for the prayers. I know first hand

> they

> > work. I am not real happy that

> > God thought this auto-immune disease, whatever it ends up being,

> was a good

> > idea. But I am

> > thankful there are medications and while it is really hard to

admit

> I need

> > a drug to survive, I will do what

> > I need to do.

> >

> > , I'm sorry you have to be on this list, but I'm glad we're

> the same

> > age! I don't have a " firm " diagnosis,

> > but I am in between Lupus and RA. Thanks for the warning on the

> > Bextra! Oddly enough, two friends of mine,

> > Dave Dewitt and Bill (professors at Michigan State

> University)

> > discovered the 2 enzyme!! Dave said

> > Vioxx really isn't bad either...you have to realize aspirin comes

> from the

> > willow tree (salix...) and they removed

> > a lot of the stomach upset from aspirin and left the anti-

> inflammatory

> > action. Well, many people (me included)

> > are overweight and use these medications for pain - but may have

a

> > predisposition to heart disease (I don't).

> > If there are any questions you think I can answer - or direct to

> the

> > " right " people, I would be happy to. We

> > need to support each other...this is scary, and it hurts!

> >

> > , Ibuprofen? Wow, the way the post came across I couldn't

tell

> if it

> > was 4x800mg/daily or 4800 mg daily...

> > sorry. Please let me know, I'll try anything. Also, one of the

> reasons my

> > rheumy got me to take Plaquenil was

> > that it has been around for 50 years...??? Hmmm...

> >

> > On another note, please add prayers again...yesterday when I went

> to give

> > my rheumy a copy of my

> > insurance card, I asked for a copy of my blood test results. I

was

> so sure

> > all of this is a big mistake, that

> > I almost broke out in tears (well, I welled up in tears), when my

> ANA

> > titer, which has been 1:40 for 2.5 years jumped to

> > 1:160 in one month. Does this mean " hello, lupus? " I am scared,

> > sorry. Or is it both?? This sucks, it really does.

> >

> > Please allow me to gripe for a minute - I have done a lot to keep

> myself

> > healthy, I do a lot for others, I know

> > about nutrition and my work and personal life has been hell, and

> felt I

> > deserved a break. What do I get? A life

> > changing disease that I can't talk to my engineer husband

> about 'cause he

> > is so neurotic and would probably think

> > I am dying and DISCONNECT from me, so I just tell him I have

> arthritis. Is

> > anyone else in this situation? He's a

> > great guy, but knows nothing about medical issues and always

> assumes the

> > worst... " Oh, Lupus/RA, when will you

> > be dead? " I tried to tell him something about it last week and

> got, " Oh,

> > you mean you need a wheelchair? " I felt like

> > saying, " Yes, to cart your dead body around. " I am sorry if this

> sounds

> > offensive and these aren't things I verbalize

> > to my husband, it's just sick mental humor that helps me get by.

> >

> > Thank you for allowing me the long post, and take care everyone!

> > Hugs,

> > Joyce in MI

>

>

>

>

>

> __________________________________________________

>