Good news... bad news.. more bad news[A little long]

[Guest guest]

Hey Group,

I had a rheumi apt on Friday it was an interesting appointment to say the least. I guess it was good news and bad news appointment. My rheumi feels that my joints have improved a lot.. Which is so wonderful.. but for the first time in my life I realized that they don't think I will grow out of this or that a remission might even be possible. They stopped using the words growing out a long time ago. My doctor basically stated that I may never have 100% relief.. but as long as I can get up and live a semi normal life thats ok.. It was a litttle disheartening. Also i have been getting some really weird reactions to the enbrel shots.. like a rash so they are putting me on tagament.. of course I can't take it till the pH probe is done.. but oh well. Dr. Chira who was a resident when I started there said he was so impressed with how much I have improved.. which so am I .. and personally I choose not to listen to that.. I'm going to acheive remission.. some day.

I ended up in the hospital last night with a severe kidney infection.. I have come to realize what a high pain threshold I have. I was not in that much pain in the kidney region.. just quite a bit of pain in the urethra.. but the amount of blood in my urine was amazing.. The nurse was shocked when I handed her my urine sample. It basically look like i diluted some blood with water and handed it to her as a urine sample.. but it was my urine sample. They were perplexed with my situation because it was not typical of what they see..but there was quite a bit of blood. I was in the ER for about five hours.. They were giving me morphine and a saline drip for my dehydration. And by eight I was finally out.. thank god. I was hoping they would not make me stay the night.. So I'm some antibiotics.. I dont remember the duration but its gonna be for awhile due to the amount of blood in my kidneys so they want to make sure the infection is all the way out. But I can still get my pH probe which I was a little concerned about. Anyway thats whats going on. Its times like these I'm glad I have the message board to talk to.. Love and hugs to everyone

(poly JRA and Spondy, 19)

[Guest guest]

Positive thoughts and prayers for better days! I know how you must feel about remission and the ideas of it but I was in remission for many, many years when I was dx'd with AHA and a rebirth of the JRA. Even though it was said I was in remission I still had to deal with all JRA had given me, meaning deformities and joint destruction. Granted the arthritis was not active but I still dealt with pain, lack of mobility and increased pain as a result the damge already done. I commend you for your attitude! That is 90% (or more) of this battle. Just keep hanging tight and hanging tough and you will do fine! Hugs and smiles...Donna

[Guest guest]

Dear , I am glad that you are feeling better, and that you didn't have to stay in the hospital. I think they will find a cure for this disease in the next 10 years or so. Medicine seems to be moving so fast now. (n, 15,systemic)

Good news... bad news.. more bad news[A little long]

Hey Group,

I had a rheumi apt on Friday it was an interesting appointment to say the least. I guess it was good news and bad news appointment. My rheumi feels that my joints have improved a lot.. Which is so wonderful.. but for the first time in my life I realized that they don't think I will grow out of this or that a remission might even be possible. They stopped using the words growing out a long time ago. My doctor basically stated that I may never have 100% relief.. but as long as I can get up and live a semi normal life thats ok.. It was a litttle disheartening. Also i have been getting some really weird reactions to the enbrel shots.. like a rash so they are putting me on tagament.. of course I can't take it till the pH probe is done.. but oh well. Dr. Chira who was a resident when I started there said he was so impressed with how much I have improved.. which so am I .. and personally I choose not to listen to that.. I'm going to acheive remission.. some day.

I ended up in the hospital last night with a severe kidney infection.. I have come to realize what a high pain threshold I have. I was not in that much pain in the kidney region.. just quite a bit of pain in the urethra.. but the amount of blood in my urine was amazing.. The nurse was shocked when I handed her my urine sample. It basically look like i diluted some blood with water and handed it to her as a urine sample.. but it was my urine sample. They were perplexed with my situation because it was not typical of what they see..but there was quite a bit of blood. I was in the ER for about five hours.. They were giving me morphine and a saline drip for my dehydration. And by eight I was finally out.. thank god. I was hoping they would not make me stay the night.. So I'm some antibiotics.. I dont remember the duration but its gonna be for awhile due to the amount of blood in my kidneys so they want to make sure the infection is all the way out. But I can still get my pH probe which I was a little concerned about. Anyway thats whats going on. Its times like these I'm glad I have the message board to talk to.. Love and hugs to everyone

(poly JRA and Spondy, 19)

[Guest guest]

Hi ,

You are in our thoughts. We'll be sending positive energies your way,

hoping that you'll be feeling better and recovering quickly. How scary,

to wind up in the hospital again, so suddenly! I hope the course of

antibiotics will help get everything back on track again, very soon.

Take Care,

Georgina

bncknwurnumber@... wrote:

> Hey Group,

> I had a rheumi apt on Friday it was an interesting appointment to

> say the least. I guess it was good news and bad news appointment. My

> rheumi feels that my joints have improved a lot.. Which is so

> wonderful.. but for the first time in my life I realized that they don't

> think I will grow out of this or that a remission might even be

> possible. They stopped using the words growing out a long time ago. My

> doctor basically stated that I may never have 100% relief.. but as long

> as I can get up and live a semi normal life thats ok.. It was a litttle

> disheartening. Also i have been getting some really weird reactions to

> the enbrel shots.. like a rash so they are putting me on tagament.. of

> course I can't take it till the pH probe is done.. but oh well. Dr.

> Chira who was a resident when I started there said he was so impressed

> with how much I have improved.. which so am I .. and personally I choose

> not to listen to that.. I'm going to acheive remission.. some day.

> I ended up in the hospital last night with a severe kidney

> infection.. I have come to realize what a high pain threshold I have. I

> was not in that much pain in the kidney region.. just quite a bit of

> pain in the urethra.. but the amount of blood in my urine was amazing..

> The nurse was shocked when I handed her my urine sample. It basically

> look like i diluted some blood with water and handed it to her as a

> urine sample.. but it was my urine sample. They were perplexed with my

> situation because it was not typical of what they see..but there was

> quite a bit of blood. I was in the ER for about five hours.. They were

> giving me morphine and a saline drip for my dehydration. And by eight I

> was finally out.. thank god. I was hoping they would not make me stay

> the night.. So I'm some antibiotics.. I dont remember the duration but

> its gonna be for awhile due to the amount of blood in my kidneys so they

> want to make sure the infection is all the way out. But I can still get

> my pH probe which I was a little concerned about. Anyway thats whats

> going on. Its times like these I'm glad I have the message board to

> talk to.. Love and hugs to everyone

>

> (poly JRA and Spondy, 19)

[Guest guest]

Goodness , that was some urine sample:( I hope the antibiotics do their

job and quickly. How are you feeling now with the kidney infection? I have

heard from many that they are extremely painful? Did you feel the pain or have

you built up such a tolerance from pain that it didn't hurt to badly? Good

luck with the pH probe. Let us know how it goes.

Take care.

Patty

[Guest guest]

Strangely enough I had no chills and my fever was rather low grade (100.7) which is why they were confused about my situation. I have to go to my adolescent medicine doctor in three days for a check up but I think that is the extent of what they are doing. I'm taking Cipro for ten days.. But they told me if I got any worse that I was to be admitted back into the hospital because they will have to run more tests. But ten hours later and I'm already feeling a little better.. bloody urine has decreased by a lot, pain is still there a little bit but for the most part I'm feeling better. I was surprised to find out how serious a kidney infection is. I was talking to the nurse about the IV they put in as it was a lot larger then I have ever gotten even for the ER department. And she told me because I presented with life threatening symptoms they had to act fast.. I looked at her like its just a little bloody pee.. I guess its never just a little bloody pee.

(poly JRA and Spondy, 19)

[Guest guest]

Thank you,

Donna: Your advice is always so helpful I really appreciate it. Knowing that you have been fighting this disease for so long yet you are so hopeful makes me feel hopeful to. I just wanted to let you know how greatful I am that your on this website.

Georgina: Thank you for your positive thoughts I really appreciate it. Your so awesome!

Lots of Love and Hugs

(poly JRA and Spondy, 19)

[Guest guest]

...

My heart is breaking for you. I hope that you start feeling better

soon

Alia.

> Hey Group,

> I had a rheumi apt on Friday it was an interesting appointment

to say the

> least. I guess it was good news and bad news appointment. My

rheumi feels

> that my joints have improved a lot.. Which is so wonderful.. but

for the first

> time in my life I realized that they don't think I will grow out of

this or

> that a remission might even be possible. They stopped using the

words growing

> out a long time ago. My doctor basically stated that I may never

have 100%

> relief.. but as long as I can get up and live a semi normal life

thats ok.. It

> was a litttle disheartening. Also i have been getting some really

weird

> reactions to the enbrel shots.. like a rash so they are putting me

on tagament.. of

> course I can't take it till the pH probe is done.. but oh well.

Dr. Chira who

> was a resident when I started there said he was so impressed with

how much I

> have improved.. which so am I .. and personally I choose not to

listen to

> that.. I'm going to acheive remission.. some day.

> I ended up in the hospital last night with a severe kidney

infection.. I

> have come to realize what a high pain threshold I have. I was not

in that

> much pain in the kidney region.. just quite a bit of pain in the

urethra.. but

> the amount of blood in my urine was amazing.. The nurse was

shocked when I

> handed her my urine sample. It basically look like i diluted some

blood with

> water and handed it to her as a urine sample.. but it was my urine

sample. They

> were perplexed with my situation because it was not typical of what

they

> see..but there was quite a bit of blood. I was in the ER for about

five hours.. They

> were giving me morphine and a saline drip for my dehydration. And

by eight I

> was finally out.. thank god. I was hoping they would not make me

stay the

> night.. So I'm some antibiotics.. I dont remember the duration but

its gonna be

> for awhile due to the amount of blood in my kidneys so they want to

make sure

> the infection is all the way out. But I can still get my pH probe

which I was

> a little concerned about. Anyway thats whats going on. Its times

like these

> I'm glad I have the message board to talk to.. Love and hugs to

everyone

>

> (poly JRA and Spondy, 19)

[Guest guest]

,

I have to tell you, I admire you!!!... you have soo much on your plate and keep getting thrown these curve balls, yet you still manage to take it all in your stride. Your attitude and determination are an inspiration to all of us. You have more wisdom and common sense than a lot of people i know twice your age.. You are a very special young lady.

I hope the infection clears quickly and all goes well with the ph probe. I will continue to keep you close in my prayers.

hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: bncknwurnumber@... >Reply- > >Subject: Good news... bad news.. more bad news[A little long] >Date: Sun, 15 Feb 2004 17:42:11 EST > >Hey Group, > I had a rheumi apt on Friday it was an interesting appointment to say the >least. I guess it was good news and bad news appointment. My rheumi feels >that my joints have improved a lot.. Which is so wonderful.. but for the first >time in my life I realized that they don't think I will grow out of this or >that a remission might even be possible. They stopped using the words growing >out a long time ago. My doctor basically stated that I may never have 100% >relief.. but as long as I can get up and live a semi normal life thats ok.. It >was a litttle disheartening. Also i have been getting some really weird >reactions to the enbrel shots.. like a rash so they are putting me on tagament.. of >course I can't take it till the pH probe is done.. but oh well. Dr. Chira who >was a resident when I started there said he was so impressed with how much I >have improved.. which so am I .. and personally I choose not to listen to >that.. I'm going to acheive remission.. some day. > I ended up in the hospital last night with a severe kidney infection.. I >have come to realize what a high pain threshold I have. I was not in that >much pain in the kidney region.. just quite a bit of pain in the urethra.. but >the amount of blood in my urine was amazing.. The nurse was shocked when I >handed her my urine sample. It basically look like i diluted some blood with >water and handed it to her as a urine sample.. but it was my urine sample. They >were perplexed with my situation because it was not typical of what they >see..but there was quite a bit of blood. I was in the ER for about five hours.. They >were giving me morphine and a saline drip for my dehydration. And by eight I >was finally out.. thank god. I was hoping they would not make me stay the >night.. So I'm some antibiotics.. I dont remember the duration but its gonna be >for awhile due to the amount of blood in my kidneys so they want to make sure >the infection is all the way out. But I can still get my pH probe which I was >a little concerned about. Anyway thats whats going on. Its times like these >I'm glad I have the message board to talk to.. Love and hugs to everyone > > (poly JRA and Spondy, 19) Plan your next US getaway to one of the super destinations here.