Re: Unsure of myself (mentions God)

[Guest guest]

Dix, Now I understand where your coming from, I didn't really know

what the AS meant. My 22 year old was diagnosed with that last year,

and she won't get treatment for it. I have been reading on it much

as possible, and try to let her know how important it is to do

something now, but you know how youngans can be.

I'm sorry to hear that your allergic to most of the meds that could

probably make you feel better. Hopefully, there will be a study that

can help you soon. I don't like Prednisone very much, I stopped

taking it, there were just too many side effects.

I think that your doing what you need to, your doing the best you can

with little med help. You take care of yourself, and I will keep you

in my prayer, Tawny

> > I have what is a problem to me that I'd like some advice on.

> > Like pretty much everyone here, I have good days and bad

days.

> Unfortunately, there have been a lot more bad days recently than

good

> ones. I have meds I can take, but tend to be cautious about

narcotic

> painkillers. I also have muscle relaxers for my fibro, and

valium

> for my AS when the inflammation starts pinching the nerves. I

try to

> take only what I need to bring it down to a tolerable level.

> Sometimes, even 2 Percocet doesn't have much of an impact. And

that's

> something I rarely do - take 2 of a med.

> > So, on the trally bad days, when it hurts just to walk,

I'll go

> back to bed and put on a relaxing CD. Sometimes, I'll end up

> spending most of the day in bed.

> > And I feel guilty when I spend a lot of time in bed. I

think

> it goes back to my childhood when I was told literally every day

that

> I wasn't good enough and I would never be good enough. Spent 15

> years in therapy getting rid of most of the " ghosts " .

> > I was also taught that there was always someone worse than

I

> was. My Dad was fully fused from AS and worked full time. Of

> course, he took massive amount of prednisone and painkillers to

be

> able to do so, and died at age 51 from the side effects of all

those

> meds. It's one of the reasons I watch my meds.

> > But I know there are people all over the world who have

many,

> many more problems than I do, and a lot of them have no meds to

help

> them out.

> > So, the bottom line is that I don't know if I should be

pushing

> myself more than I do on the bad days, or if I should find a way

to

> stop feeling guilty for resting on those days.

> > Any help would be most appreciated.

> > Dix

> >

> >

[Guest guest]

Tawny,

I'm sorry to hear about your daughter. While AS strikes only young people,

it can take time for it to get to the point of fusing. Unfortunately, there are

no meds that will actually prevent it, although there is some indication that

Remicade may be helpful.

But how fast and how far it advances is all in the genes. My Dad was fully

fused by age 27. I was diagnosed at age 28. But for some reason, it took 30

years before the fusing started. I did a lot more exercising that my Dad had a

chance to, have gone to PT to learn exercises to srengthen the back muscles and

improve posture so that I don't get so bent over and to help keep me limber.

I had hoped that if it took 30 years to start fusing, that it would take

another 30 before it was completely fused. I haven't been that lucky. It's

fused about halfway up my back now. But the PT exercises and other have

definitely helped, because I'm just slightly bent, and can still straighten up

with effort, and keep uyp the exercises for that. My neck tends to look left,

and I have exercises for that too.

It's very hard when you're that young to be diagnosed with a disease that

you know can lead to your back andneck being basically paralyzed. It's very

scary. She is probably in denial. Maybe if you tell her that PT will teach her

exercises that will help, she might be willing to try that.

Andit's important she know that it's not inevitable that it leads to fusing.

There are many people with AS who never get beyond inflammation of the spine.

AS does not mean fusing. It means arthritis of the spine. Maybe if you can get

her to think of it that way, even talk with her Dr., it will be easier for her

to accept.

I'll keep her in my prayers. And thank you for your message and prayers. I

appreciate both very much.

Do you live in Illinois? We used to live next door to someone who had twin

daughters, one named Tawny.

Dix

[ ] Re: Unsure of myself (mentions God)

Dix, Now I understand where your coming from, I didn't really know

what the AS meant. My 22 year old was diagnosed with that last year,

and she won't get treatment for it. I have been reading on it much

as possible, and try to let her know how important it is to do

something now, but you know how youngans can be.

I'm sorry to hear that your allergic to most of the meds that could

probably make you feel better. Hopefully, there will be a study that

can help you soon. I don't like Prednisone very much, I stopped

taking it, there were just too many side effects.

I think that your doing what you need to, your doing the best you can

with little med help. You take care of yourself, and I will keep you

in my prayer, Tawny

> > I have what is a problem to me that I'd like some advice on.

> > Like pretty much everyone here, I have good days and bad

days.

> Unfortunately, there have been a lot more bad days recently than

good

> ones. I have meds I can take, but tend to be cautious about

narcotic

> painkillers. I also have muscle relaxers for my fibro, and

valium

> for my AS when the inflammation starts pinching the nerves. I

try to

> take only what I need to bring it down to a tolerable level.

> Sometimes, even 2 Percocet doesn't have much of an impact. And

that's

> something I rarely do - take 2 of a med.

> > So, on the trally bad days, when it hurts just to walk,

I'll go

> back to bed and put on a relaxing CD. Sometimes, I'll end up

> spending most of the day in bed.

> > And I feel guilty when I spend a lot of time in bed. I

think

> it goes back to my childhood when I was told literally every day

that

> I wasn't good enough and I would never be good enough. Spent 15

> years in therapy getting rid of most of the " ghosts " .

> > I was also taught that there was always someone worse than

I

> was. My Dad was fully fused from AS and worked full time. Of

> course, he took massive amount of prednisone and painkillers to

be

> able to do so, and died at age 51 from the side effects of all

those

> meds. It's one of the reasons I watch my meds.

> > But I know there are people all over the world who have

many,

> many more problems than I do, and a lot of them have no meds to

help

> them out.

> > So, the bottom line is that I don't know if I should be

pushing

> myself more than I do on the bad days, or if I should find a way

to

> stop feeling guilty for resting on those days.

> > Any help would be most appreciated.

> > Dix

> >

> >

[Guest guest]

Hi Dix,....My daughter is upset over being diagnosed with AS. She

thinks it comes from me why she has it, but I don't have AS. When I

was first diagnosed with RA, she was really upset about that.

When it didn't work out with her boyfriend, she tells me that he

don't won't to be with somebody that is going to be crippled,

thinking she is going to get RA.

She is in the military right now, and it scares me with the AS,

because they lift so much weight, and she is so small.

I have lived in Oklahoma all my life, so it's not me,lol

> > Tawny,

> > Thanks for your message.

> > The problem is that with ankylosing spondylitis (AS), I

have to

> get pressure off my spine. So even on good days, I have to lay

down

> for at least 45 minutes 2-3 times a day (although I'm not always

good

> about it). On bad days, if the AS is not a problem, I do try to

move

> about. When the AS is a major problem, like today, staying in

bed

> most of the time is best. Your message helped me feel less

guilty

> about it - thank you!

> > Are you ready for this? I'm allergic to ALL NSAIDs, all

cox-

> 2s, all DMARDs. My Dr. is hoping for a clinical trial of a new

type

> drug to get me in, but so far, they are trying to improve the

> existing ones. The only thing I can take is prednisone, and I

can

> only take so much of it, or I'll start bleeding internally.

> > It seems to me that if the dear Lord was going to allow me

to

> have all these illnesses, that he could have allowed me to be

able to

> take at least one of the DMARDs! But apparently, that is not in

His

> plan.

> > When I lay in bed, I put on a relaxation tape, and so I

feel

> better when I get up. If I use self-hypnosis I can give myself a

> post-hypnotic suggestion that I will not feel any pain or

stiffness

> for a few hours. It only works for about an hour after, but an

hour

> is better than nothing!

> > Of all my diagnoses, the RA seems to be one of the lesser

> ones. AS and fibro are by far much worse. I tend to be stiff in

the

> morning, and then not again until the temperature starts dropping

at

> night.

> > There is a new therapy pool near us, and I'm going to check

it

> out - I love swimming, and I know it's one of the best exercises

for

> people with arthritis. Gardening is also good, and I love

> gardening. I used to walk on a treadmill for up to 90 minutes a

> day. My Dr. won't let me get on it right now. But I think I'm

going

> to try getting on for just 5 minutes 3 times a week and see how

that

> goes. Maybe over time I'll be able to build the time up.

> > Thanks again for your message.

> > Dix

> >

> > [ ] Re: Unsure of myself

> >

> >

> > Hey Dix, I know what your going through, I have mostly bad

days

> it

> > seem anymore. I just can't tolerate the pain like I use to,

so I

> do

> > take mine when I need them. I find laying in bed for long

> periods

> > just make my joints worse. I have to move around quite a bit.

> > It is scary when you had to watch someone you love, go

through

> pain,

> > and pass at a early age, I can understand why your cautious.

> > My advice would be,....Your the only one who knows how much

pain

> you

> > can tolerate. It is very important with RA to keep joints

> active as

> > possible, we have to keep moving.

> > It is very important to take the meds that slow the

progression

> of

> > the RA down, you want to try to take the best possible care

of

> you.

> > You shouldn't feel guilty of resting when your not feeling

well.

> We

> > all want our lives to be normal, and to be able to do

activities

> that

> > everyone else does, but we have a limit. So, we need to not

push

> > ourselves, and others shouldn't make us feel bad when we

can't.

> > You take care of yourself, and know that were all here for

you,

> Tawny

> >

> >

> >

> >

> >

> >

> >

> > --- In , " Dixie " <dix7chix@c...>

wrote:

> > > I have what is a problem to me that I'd like some

advice on.

> > > Like pretty much everyone here, I have good days and

bad

> days.

> > Unfortunately, there have been a lot more bad days recently

than

> good

> > ones. I have meds I can take, but tend to be cautious about

> narcotic

> > painkillers. I also have muscle relaxers for my fibro, and

> valium

> > for my AS when the inflammation starts pinching the nerves.

I

> try to

> > take only what I need to bring it down to a tolerable level.

> > Sometimes, even 2 Percocet doesn't have much of an impact.

And

> that's

> > something I rarely do - take 2 of a med.

> > > So, on the trally bad days, when it hurts just to walk,

> I'll go

> > back to bed and put on a relaxing CD. Sometimes, I'll end up

> > spending most of the day in bed.

> > > And I feel guilty when I spend a lot of time in bed. I

> think

> > it goes back to my childhood when I was told literally every

day

> that

> > I wasn't good enough and I would never be good enough. Spent

15

> > years in therapy getting rid of most of the " ghosts " .

> > > I was also taught that there was always someone worse

than

> I

> > was. My Dad was fully fused from AS and worked full time.

Of

> > course, he took massive amount of prednisone and painkillers

to

> be

> > able to do so, and died at age 51 from the side effects of

all

> those

> > meds. It's one of the reasons I watch my meds.

> > > But I know there are people all over the world who have

> many,

> > many more problems than I do, and a lot of them have no meds

to

> help

> > them out.

> > > So, the bottom line is that I don't know if I should be

> pushing

> > myself more than I do on the bad days, or if I should find a

way

> to

> > stop feeling guilty for resting on those days.

> > > Any help would be most appreciated.

> > > Dix

> > >

> > >