Re: Re: Unsure of myself (mentions God)

[Guest guest]

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

> 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

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