Sunday, March 8, 2015

Never Saw This Coming

by Leann

For those of you who do not know, I have been battling several "invisible" illnesses for a long time. Late in the 90s, the diagnosis was fibromyalgia, then came Chronic Fatigue syndrome (which has a new name to eliminate the idea this isn't real and is abbreviated as ME). Research now shows both of these are neurological in origin (NOT psychosomatic), but no one has the answer--despite plenty of snake oil salespeople saying they can cure these illnesses.

About 2005, a blood test hinted at Lyme and then a comprehensive test sent to California confirmed it. I also had multiple co-infections and ended up being on antibiotics for almost two years. The side effects were awful, but I thought this was the answer. My blood tests were below "symptomatic" levels for about a year and then they weren't. Back on antibiotics. So why didn't I feel better? Why did I have so much pain and so much fatigue? And why, when I had my gall bladder out, did I nearly die? (That was super scary and the poor care I received in the hospital has made me phobic. I never want to go under anesthesia again!)

But the fatigue and the pain kept getting worse. This past year, I developed double vision, trouble swallowing and terrible neck pain. I thought it was the Lyme or one of those other mystery illnesses. Then I went for my yearly eye test and mentioned the double vision. (It was intermittent, but was happening every day for short periods.) My nerdy (wonderful) optometrist was able to create the double vision in the office by making my eyes work extra hard. She promptly sent me to a neurologist. I had many tests, most of them inconclusive, but the neurologist felt that I might have myasthenia gravis. He put me on the medication that has been used for this autoimmune disease for almost 50 years.

Trouble is, this medicine is very hard on the stomach. I had to gradually increase it and take another medication along with it to combat the side effects. (Almost everyone has the side effects, not just me). The good news is that my neck pain is gone, the difficulty swallowing is gone and the double vision has been reduced dramatically. I have been unable to increase the medication to the correct dose yet. So perhaps in the future, all the symptoms will go away. The fatigue is better, too. But it's still there, always lurking.

This is a story of never giving up hope that one day, all these problems would go away. Have I seen my share of quacks? Oh yes. Have I felt like some doctors don't want to deal with this? Yup. But here in a small city, I found two doctors who were willing to go the extra mile and work on finding answers. That has been uplifting after years of disappointment, pain and confrontations with folks who wanted me to just go away. So, if you have a problem, my advice is to never give up. I never gave up on getting published, either. I guess I'm just stubborn, but I stayed true to myself. This is why I only write one book a year. And now I have one piece of my own very personal mystery. Thanks for reading my books. Writing has kept me sane!