But You Don’t Look Sick

Dr. Amersi at 4:30pm

So I had this grandiose idea of pitching a story to Marie Claire.  This story.  There is a need for a public face for lupus.  Most people think it’s a hypochondriac’s lazy person’s disease because there are no obvious, physical symptoms and most patients don’t look sick.  I was one of those people who didn’t believe that something like Chronic Fatigue Syndrome was a real thing.  And now that I’ve experienced what it’s like to sleep 12-14 hours and never feel rested and have no energy to do absolutely anything, I know that these malfunctions in our bodies are real and not in our heads.

Dr. Solsky told me about getting shot of a drug called Lupron to help protect my ovaries during the Cytoxan treatment.  Supposedly, it would shut down my ovaries to limit the exposure to the chemical.  Hence preventing premature ovarian failure that would leave me sterile.  I’ve always thought that I wanted kids and now faced with this decision and not acting adamantly on it, I’m not so sure.  I guess I don’t know if I’m sure that I want them.  Other women, take any and all precautions regarding the risks just to ensure the chance at attempting pregnancy.  I say if it’s in the cards, I will have a child one way or another, right?  I’m just going back and forth on it.  Half of me wants to take the precaution and the other half of me doesn’t want to inject any more drugs into my body than I really need to.  That and the fact the insurance is giving me a hard time covering it and would cost me about $600 an injection for every month I’m on the Cytoxan.  This is a huge decision that will help delay the start of the Cytoxan treatments, so at the very least it’s buying me some time.

Today was a good day.  I had a slight headache on my drive to see Dr. Amersi for a follow-up after the biopsy.  She wanted to make sure everything was healing well.  So far, so good.  Everything is healing perfectly.  No infection or complications.

I had my cousin Tang and his girlfriend Bo who are visiting from SF over for dinner last minute.  So I had to be creative and find some stuff to make in the kitchen.  I settled on mackerel in tomato sauce, fried egg and onion omelette, and sautéed spinach.  I think I’m beginning to feel the enjoyment out of entertaining out of the home. I’m becoming my very own version of Martha Stewart=)


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