Mary Newman's Blog - Posts Tagged "lupus"

As most of my family and several of my friends know, I have fibromyalgia and lupus, along with the normal osteoarthritis many people my age start getting. Since it has been a wet, cold fall here in Northeast Oklahoma, I really hurt. I don't talk about this much, at least publicly, because I don't want to be seen as a whiner or someone who is trying to get sympathy. You see, when I was a kid, about the worst insult in the world was to call someone a cry baby or accuse them of being a whine ass. It's stuck with me all these years.

Trying to stay positive while dealing with the resulting pain and fatigue is becoming one of my greatest challenges. Illness is never easy, and long-term, invisible illnesses are even worse. I look fine so unless the pain is so bad I have to walk with my cane, no one has a clue that just standing in a line, sitting for a great length of time, or walking from the car to the store can be challenge.

I try very hard not to put my life on hold during the bad times, but that's not always possible. Last night I slept for twelve hours straight, although I hadn't done anything especially taxing the day before. My body was just exhausted, I guess.

For those of you who don't know, fibromyalgia causes you to feel pain in any part of your body, at any time, for no specific reason. It also causes you to be fatigued after doing simple day to day tasks. Sometimes it feels as if my arms and legs are so heavy I can't even lift them. Lupus, in layman's terms, means my body is fighting itself. Somewhere along the line the good guy antibodies didn't get the message that my body is mine and they fight as if I'm an intruder. Neither has a cure.

In my case, at least, I deal with my illness without the care of a doctor or medications, other than OTC painkillers. Why? Because I can't afford $200 a pop to see the doctor nor can I afford expensive medications that wouldn't cure, only mask or allow me to ignore what is happening. No, I don't have insurance, Obamacare not withstanding. Oklahoma opted out of the Medicaid expansion, and my income is a small VA widow's pension that barely covers living expenses.

My joy in life comes from my writing. I lose myself in my fantasy worlds where love is love, impossible things happen, and traveling out among the stars is as mundane as a trip to the corner market. Good always overcomes evil, my characters get their HEA, and life is filled with love and happiness. Someday, if I publish and sell enough stories, I'd love to walk away from the pension, buy a functioning RV, and travel the country once more. It's my dream, and I hold onto it with both hands as tightly as I can.

Being a writer is cathartic for me. It allows me to write down my challenges, thoughts, ideas, and dreams and turn them loose out among the universe. Sometimes, that means I can let a particular challenge go and other times it just feels good to put it out there so it doesn't feel as if I'm drowning.

This is my life. I don't ask for sympathy or desire someone to come in on their trusty steed and slay my dragon. These are my challenges, and I own them. Sometimes I cry, sometimes I laugh, but all the time I live as positively as I can.