Friday, July 12, 2013


OUCH! My back has hurt so much today! Spinal stenosis added with osteoarthritis added with systemic lupus! Strained it from the yard sale last week dragging boxes out and in. Hurts to stand. Hurts to sit. Hurts to lie down. Took forever to fall asleep last night. Wish the flector patch was large enough to cover my entire back!

A friend asked if she started my lawnmower if  I could push it across the yard. I told her I couldn't for several reasons:

1. I can't feel anything from my knees down. Now I can't feel anything from partial thighs down. Hit a hole and down I go.
2.  Heat makes me physically sick.
3.  Sun exposure is a big no no for lupus.

I once told a friend if I ever wanted to leave this world, all I had to do was stop taking my meds and stay in the sun for a day. Yes, it was a joke, but there's a lot of truth there.

It is so hard to explain what it is like to live in a body that has been so destroyed by this horrible disease for eighteen years. Add to it no functioning thyroid (without medication), an aneurysm below my heart, lung damage from the disease, nerve damage in my hands and arms, a TIA and lupus damage that has affected my memory and thinking process, etc, etc., etc. Unless you experience it yourself, you just don't understand it. I try to be kind to those who don't get it, but it is so frustrating. I want others to care enough to try to understand.

Years ago I use to teach school, go to my dad's on the weekend, clean his house, cut his grass, go home and clean my house, cut my grass, grade papers until I fell asleep and start all over again. Now I can barely walk across the floor without suffering.

Never take one day for granted. Be thankful if you can work. Be grateful if you don't have to take twenty different medications a day. Be very grateful if you don't have to visit multiple doctors. Be extra extra grateful if you have family. Be extremely thankful if you don't have to choose between buying food, filling medications or paying bills.


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