Lupus and the Hard Questions

When you get a diagnosis like lupus, part of you listens to the doctor as she or he tells you what to expect from the disease and the treatment.  The other part of you is asking the real questions, the hard questions, and these are rarely spoken aloud.  I decided to begin some posting to deal with the real questions.  It doesn’t bother me to discuss them.  I’ve been living with them and thinking about them for sixteen years.

1.  How bad is this?  I mean, am I going to die soon?  Well, obviously I have lived for sixteen years and I’m not on my death bed, so some people live a long time with lupus.  Actually, most people now live a long time with lupus.  It’s not a death sentence, it’s a disease that can be managed.  In the next ten years, there will probably be increasing talk of a cure for the disease, as the ability to do that is getting close.

2.  What will kill me then?  These days most lupus patients die of vascular disease.  The inflammation in the disease causes early atherosclerosis and that is the stuff that produces strokes and heart attacks.  We do have the ability to fight back the same way anyone with risk factors tries to prevent those complications.  We can eat better, exercise, and know the early warning signs.

3.  Are there visible signs of the disease?  Lupus has a form that only affects the skin.  It is called discoid lupus.  It is much less serious than systemic lupus, but it can cause rashes and scarring of the skin.  Systemic lupus patients are also susceptible to skin rashes.  Many have a reddish, butterfly-shaped rash that covers both cheeks and the bridge of the nose.  Treatment with high doses of prednisone has it’s own body changes:  weight gain that is prominent in the trunk of the body but not the arms and legs, a round face, purple stretch marks and increased fatty deposits in the middle of the upper back.   

4.  Do you have any embarrassing disabilities like incontinence?  Nope, lupus usually doesn’t affect the bowels or bladder or our ability to control them.  I do find it embarrassing sometimes that my balance isn’t great.  I fall about once every six months and that is just not any fun, not to mention totally not sexy.

5.  Are you mad at God for your being sick?  Obviously this is a totally personal view, but I don’t think God makes people sick.  I think he/she made us, put us in a world that has it’s own natural laws and occurrences, and then stuff happens to us depending on where and who we are and what luck we’re born with.  One of my favorite reads in this regard is Kushner’s When Bad Things Happen to Good People.   

There.  That was the first half of the questions.  I’ll finish them tomorrow.  Meanwhile, I’m getting ready to sample the loaf of bread I baked this evening.  Here’s the way I did it:

1/2 cup warm water

2 packages of yeast

1 cup of warm water

1/2 cup of sugar

1/2 cup of “buttery spread”, in this case, Smart Balance

about 1 teaspoon of salt

2 cups of whole wheat flour

2 cups of white flour

I usually begin by being thankful that I can bake bread and don’t have to eat storebought bread every day.  Then I dissolve the yeast in the half cup of warm water and dissolve the Smart Balance in the microwave (low power, go slow – you don’t want to boil it).  Pour the yeast mixture, sugar, 1 cup of warm water, and Smart Balance into a large bowl. Mix well.  Add the salt.  Add flour, 1 cup at a time.  After each cup, stir well to help develop the gluten in the flour.  After all four cups of flour are in, you should be able to turn out the dough onto a flat, clean, floured surface and knead it.  Give it a good kneading, making sure all the flour is completely mixed in and that the dough begins to get a little elastic.  It should not stick to your hands when you shape it at the end.  Make a nice ball, put back in your bowl and cover it with waxed paper or oiled plastic wrap.  Put it in a warm place to rise.  Let rise, punch down, let rise again, punch it down again.  Shape it into a loaf, put it in a pan.  I put it in the oven and then turn the oven on to 400, letting the last rising take place in the pan as the temperature slowly goes up to 400.  Cook until it has a crust you can knock on and a toothpick comes out clean. 

Mmmmm, this is delicious.  The texture is perfect.  I do love baking!



One Response

  1. The autoimmune complex makes me very nervous. I have a strong family history. My father died in 1949 (age 46) of periarteritis nodosa. He was at Mayo Clinic, and was part of the testing program for the drug that became cortisone. My sister died in 1996 (age 66) of scleroderma. Hers affected her GI system, not her skin. Somehow or other when I was diagnosed with breast cancer (treated with lumpectomy and radiation), it really didn’t scare me. I’m much more paranoid about the autoimmunes. I’m glad you’re doing so well – as the management and treatments improve.

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