Re: /Having a bad day...

[Guest guest]

, I am so sorry you are having a bad time. Hopefully this flare will end soon.

You have mentioned protein in your urine, but do you know what your creatinine level is? Creatinine is more important than the protein. I was diagnosed in 1887 and since then my lowest 24 hour protein was over 4 gr. It went up to as high as 11 gr about a year and a half ago when I was put on chemo. It wasn't the protein so much that decided the chemo, it was the creatinine. That is what shows how much toxins are being left behind in your bloodstream. I agree in a long term protein is no good. They used to not worry about it, but now they have research that says extended protein will damage your kidneys. I think that was my case, but it did take years.

I was on 6 monthly cytoxan IV and then 6 quarterly treatments. A total of 18 months. My nephrologist says this is generally the protocol with cytoxan, unless there are other circumstances. It is good to be finally done with it, I hope I never have to do it again.

Good luck , watch out for yourself and hopefully you'll have a better visit come July.

Mojo

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.

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