Tuesday, November 8, 2016


I start back on Benlysta tomorrow. Having been removed from plaquenil after taking it for 22 years, I've reached the end of the line of medicine to treat lupus. The plaquenil caused eye damage. Add to it glaucoma and cataracts on both eyes, they hope removing me from the medication and removing the cataracts will help some. At least they will be able to tell how much damage glaucoma has caused. Today I had trouble reading the election ballot. What will it be like next time?

My greatest concern is the twenty percent of the cost of Benlysta not covered under my insurance. Big worry!

Last week I returned to the retina specialist. He did several more tests to determine the plaquenil damage. I was there four hours, two of which were spent waiting. The new test measured the eye brain connection that somehow clarified the extent of damage to my eyes from medication. They took a string similar to dental floss and stretched it across my eye with the string touching the eye. This was done to both. Hooked up electrodes to both earlobes and to my arm. By the time the day was done my eyes were screaming with pain. All I could think was this brand new machine, the only one in Kentucky, was progress? Lunatic must have designed it.

I'm tired of being a guinea pig. Tired of pills. Tired of struggling alone. Tired of counting pennies just to survive. Tired of being sick and tired. Sometimes I wish I were a child who was adopted by someone who would take care of me. So what do I do? No open doors. No opportunities. Back to taking one day at a time. It is the only way to function.

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