for

[Guest guest]

,

I hope you feel better soon. Don’t think you are an imposition on the

Dr.’s. That’s why they make the big bucks.

From: Marie s

Sent: Wednesday, May 12, 2004 8:04

PM

To: LUPIES

Subject: Having a bad

day...

Dear Lupie Members,

I was scheduled to

see my rheumy on the 20th, but since I called in with chest pains his office

called for me to come in earlier today. He said that from me describing

the pain there could be fluid around my lungs or even my heart, but he doesn't

believe that the Lupus is affecting my heart because of my age. He

ordered X-rays just to be sure. I'm going to get that done in the

outpaient center some time next week.

I showed him the

bruise like spots on my hands and he said that those are maybe caused by the

Prednisone. He didn't give me a conclusive answer though. I guess

he didn't know himself. I'm still on 10mg of Prednisone and I want off of

it. Especially if it's going to be changing me like it has been doing.

A little sad that he hasn't decreased it again.

I'm happy for Mojo

since she's not on chemo anymore. I have a feeling that I'll be taking

the Cytoxan chemo drug for a while longer. I've had 6 treatments so far

since November of last year. Since the Cytoxan is paid for by the

hospital, he decided that he's going to keep me on it since I'm waiting for the

disability to go through and everything. He told me that there would be 6

treatments for 6 months then there would be one treatment every three months.

Well, he said that

the protein in my urine has improved, but I'm still leaking a lot of protein.

It didn't improve enough to his liking. I guess I'm still in a flare.

I've been flaring since December of 2002. I wish that it would just stop.

Anyways, since there is still a lot of protein leakage, I'm going for the chemo

treatments every two months instead of 3. I guess that isn't too bad.

It just makes me feel deathly ill, like I'm the worst case imaginable.

I'm scared again. I see my rheumy again in July and I feel that I'm going

to fall apart before then.

I'm just not having

a good day at all. All I heard was bad news. It just hit me ...

wow, I'm really sick. From the members talking about kidney involvement

with Lupus if you have protein leakage for a year or more it causes damage to

the kidneys. I've had a lot of protein in my urine since March of 2003.

Now, I'm terrified I'm going to go into kidney failure. Watch him tell me

that in July. I just know it. My mom is scaring me on top of all

this because she is thinking the worst herself. Ha. I've been

having chills in my legs especially when I lie down to go to bed at night.

He prescribed some medicine to help with that. He said that my nerves

were stretching. That sounds scary. He said that that medicine

would help with the arthritic pain in my feet since he's not able to prescribe

any arthritis medicine because of my kidneys.

I'm trying to get

into this program where they will provide me with free medicine. I had to

give those papers to the doctor so he could fill them out. I also gave

him the paper for the handicapped parking permit. I signed and dated the

paper and I wasn't standing before a notary person who could witness me signing

it. Because of that the paper was null and void. So, they're

sending me all the way back to the tag office which is all the way down town in

a lot of traffic to get another sheet of paper. Fine. No one told

me to NOT sign it. Oh, well.

My rheumy said that

he had a nursing staff that could take care of the medication papers for me.

He gave the papers to this one nurse. She merely glanced over the papers,

put a paper clip on them, then handed them back. I was thinking that she

got done with them pretty quickly. I skim through the papers and she had

handed them all back blank. I was thinking, 'You've got to be kidding.

I could've done that.' So, I handed them back to her telling her to fill

them out. She had me a my mom standing up waiting 10 minutes as she did

this. My mom got tired of waiting and said should we come back and that's

when the nurse told us we should. I don't know why that particular nurse

dislikes me so. Maybe she's tired of seeing me since I go up there so

much.

My rheumy seemed

kind of rushed this morning. That made me feel kind of bad because I'm

thinking that I'm not important to him. If my own doctor doesn't have

faith in me, then who will. He's probably sick of me too. I feel

like such a burden to these people. If only I could work then I would get

back to my independent self. Sorry for talking so much. This has

been bothering me all day. Just thought I would give an update on myself.

I guess I'll go back lurking now. Thanks for listening.

-.