Beverly J Raffaele with her Granddaughter Katie.

I was in denial to the point of disbelieving my doctors AND my tests. One day I marched in and told Dr Rivas that I don't have lupus. he said "okay, you don't have it then." His sarcasm was justified ...For many years they told me that I had "systemic lupus erthymatosis" and I turned in all of the reports, from all the doctors, to SSI and they disabled me the first time out. Still, deep inside I didn't believe them.

I have always had microscopic blood in my urine and it wasn't taken too seriously. They did a cat scan of my kidneys twice and saw nothing; but now, that microscopic blood has suddenly become significant. I am in third stage Chronic Kidney disease and there is five stages. Lupus Nephritis they say.

All these years I refused their steroids. My rheumatologist suggested it a couple of time s and I (being in denial) said no way. They killed my mother- destroyed her cute little figure, made her hair fall out, put a hump on her back and gave her that "moon face" that cushings disease gives one. The prednisone started in on her blood pressure, and then gave her prednisone induced cataracts, prednisone induced diabetes, and went on to make her prone to infections and finally die, at age 67, of a bacterial pneumonia that anti-biotics wouldn't touch.  My hatred for that drug is painfully personal.

I have six grown children, three have my blood type and three have their father's. They all volunteered to get tested should the time come that I might need a kidney. It breaks my heart to think that a child of mine, would face a surgery, with it's possible complications, for me. What if something happened to them, I couldn't emotionally survive it. I am sitting here with a big lump forming in my throat just thinking about it.

I have tried to find a prognosis for kidneys that are filtering my blood at 49 %. It's always predicated on whatever treatment they give me and how well I tolerate it. I am 59 now and so far I am not on anything but requip for the horrible restless leg syndrome that I have. The meds they prescribe for this are brutal. There is the prednisone, then plaquenil, it can cause (blindness) There is Cellcept, (it can cause lympoma) there are all the immunosuppresive drugs that have the same affect on the body as prednisone.

What will I die from first, hmm, the drugs or the disease? AND if I refuse the drugs, then how long will it take for my kidneys to kill me. Can I do this with diet or at least slow it down? I can't find an answer from anyone. Oh yes the neurologist said that I have lupus neuritis too. It's in my legs from the horrible shooting pains that burn like I am being electrocted.

Waiting is hell. I see the nephrologist soon for some more tests and that includes a possible kidney biopsy. So far the tests are, gfr 49- ultra sound shows thinning of the cortex on my right Kidney.   

This hasn't sunk in and probably won't until I get concrete, in my face, test results and every test they have has been looked at by more than one professional. Even then, I may deny it. Why? Because I have sixteen grandchildren that I worship and I have plans, a lot of plans.