Re: Edema Leg, Prednisone

July 9, 2001

This is one weird disease. The swelling and edema only affects Randy's

right knee and lower leg. But the last flair up, his hands ached.

I come home from work. He is in bed, yelling for Clyde to start the

chorus! I know I am in for a long night. He also sounds like he is

speaking in a foreign language. Did I mention the first doctor we saw,

his nurse suggested finding a good born again church and getting an

exorcism done. She was serious. I was rendered speachless for once.

His fevers hit 104. Tylenol is useless. But tried fever few, black

current oil and bromelain. Fever broke in two hours. The flare up wasn't

as intense, but it lasted longer. Two days.

I am keeping a journal of all the flare ups. What meds we use, duration

etc. Also am having the prednisone script filled.

I am hungry for information and everyone's stories!

Steph

July 9, 2001

Hi Steph,

Now I've heard it all! An exorcism???!!! If this wasn't so

serious it could be funny. There are a lot of us here that

were/are not " ourselves " when our fevers and our pain gets out

of control.

Keeping a journal is *very* important. It helps when you want to

look back and see what meds were being used at a certain date

etc. Also, it can be of great help for receiving disability pay.

The Prednisone will probably make a great difference. I know..

we all hate to take it, but sometimes we have no other choice if

we want to go on. sometimes it seems we just get caught between

that infamous " rock and a hard place. "

Keep us informed. okay? And don't forget Steph, you need time

for " you. " if it's to be a long night and you already know that...when

you do get a break..play some soothing music, have a cup of tea or

something else warm. Take a warm bath or shower and rub some

lotion all over and put on a comfortable ...whatever you feel comfortable

in..don't forget that music now. Try to keep yourself positive and upbeat.

Hugs, Tricia

Re: Edema Leg, Prednisone

> This is one weird disease. The swelling and edema only affects Randy's

> right knee and lower leg. But the last flair up, his hands ached.

> I come home from work. He is in bed, yelling for Clyde to start the

> chorus! I know I am in for a long night. He also sounds like he is

> speaking in a foreign language. Did I mention the first doctor we saw,

> his nurse suggested finding a good born again church and getting an

> exorcism done. She was serious. I was rendered speachless for once.

> His fevers hit 104. Tylenol is useless. But tried fever few, black

> current oil and bromelain. Fever broke in two hours. The flare up wasn't

> as intense, but it lasted longer. Two days.

> I am keeping a journal of all the flare ups. What meds we use, duration

> etc. Also am having the prednisone script filled.

> I am hungry for information and everyone's stories!

> Steph

>

July 9, 2001

I feel real misty. I am so glad my dear friend found this site. I know

this is where I need to be and I do need the support. Also will be there

for any of you!

So the delirium is common? I feel like Rod Serling is tapping me on the

shoulder when Randy starts in.

I am a nurse on a psych unit too. Then come home to Mr. Chaka Zulu,

screaming and hollering! Oy! And then I start running with the

thermometor and cool wash clothes. He usually is so out of it, he

resists my efforts. But we are a team, and we are in this together!

Love! Steph

July 9, 2001

Hi Steph,

Hope your hubby is feeling better soon. I know that when my fevers get high,

I tend to be somewhat delirious at times.

Angie

Re: Edema Leg, Prednisone

> I feel real misty. I am so glad my dear friend found this site. I know

> this is where I need to be and I do need the support. Also will be there

> for any of you!

> So the delirium is common? I feel like Rod Serling is tapping me on the

> shoulder when Randy starts in.

> I am a nurse on a psych unit too. Then come home to Mr. Chaka Zulu,

> screaming and hollering! Oy! And then I start running with the

> thermometor and cool wash clothes. He usually is so out of it, he

> resists my efforts. But we are a team, and we are in this together!

> Love! Steph

>

July 10, 2001

Steph,

What meds is Randy taking?? Does he have a rhuematologist?

My heart goes out to the both of you. remember " after the storm,

the sun always shines again. "

Tricia

Re: Edema Leg, Prednisone

> I feel real misty. I am so glad my dear friend found this site. I know

> this is where I need to be and I do need the support. Also will be there

> for any of you!

> So the delirium is common? I feel like Rod Serling is tapping me on the

> shoulder when Randy starts in.

> I am a nurse on a psych unit too. Then come home to Mr. Chaka Zulu,

> screaming and hollering! Oy! And then I start running with the

> thermometor and cool wash clothes. He usually is so out of it, he

> resists my efforts. But we are a team, and we are in this together!

> Love! Steph

>

July 11, 2001

Dear Steph,

You are doing everything right. Keeping the journal is great something I

wish I would have done. I know all of this must be difficult on you and I

hope you are taking good care of yourself. Your husband is lucky to have

you. Sometimes and especially during the onset Prednisone may be the only

thing to help. I don't know that is the only drug in the past that seemed

to help me. Although everyone is certainly different.

I will continue to pray for both of you. I am outraged about the one

Nurse's response that is awful. Please keep us posted when you can.

Best Wishes,

jatw@...