Tuesday, June 4, 2013

A Lupus Day

It is a Lupus day. I woke up, fed the cat at 5:00 a.m. because that is when he yells in my ear to get up and feed him. If you have a cat, you know there is no appeasing one when it is time for him to eat. So I pulled myself up, pushed myself along the wall until I found the food to give him, then pushed myself along the wall again and opened the front door to give the outdoor cat the leftovers.

I had to crawl onto the couch and rest for an hour after feeding the felines this morning. I could not walk the short distance back to my room. It was too painful. When I was able to pull myself up, I moved slowly along the wall until I made it safely back to my bed.

There was no fever. No warning of pending flare. Just pain. The same pain I wake up with, carry as a burden throughout the day and pray will subside when sleep finally comes.

Today's lupus showed itself in extreme fatigue. It isn't the fatigue that a short nap can cure. It isn't the fatigue that goes away after a good night's sleep. It is the kind of fatigue that feels like someone took your body and wrung it out like a wet bath cloth. They left you hung out to dry but full of painful wrinkles unable to move.

There was no rain today. No extreme stress. No lupus flare indicators. It just came like a thief in the night to steal another day of my life away. The lupus thief has already stolen the quality of my life in so many other ways. First, opportunities for friendships - some people think it is contagious. They are afraid to touch me, to hug me, afraid they will catch this horrible disease. They simply do not understand it is not contagious. In fact, they are more dangerous to me than I am to them. My immune system is weak and I catch colds, flu, and infections far more easily. Then the monster attacks my organs instead of the infection.

Second, some don't understand that I have to plan ahead of time so that I can reserve my small amount of strength. Just because I look okay on the outside does not mean the disease has not destroyed me on the inside. It takes planning to make sure I can enjoy the time spent with them.

Third,  for the past eighteen years I've spent many days, weeks, months in the ER, doctor's office, and hospital. I've been on and continue to be on twenty different medications just to maintain this disease and to keep me alive. It is extremely expensive. My former doctors did not expect me to live as long as I have. Sometimes I wonder why God still allows me the grace to live another day.

Fourth,  for the past eighteen years, this disease has caused many other illnesses for which I'm suffering as well as systemic lupus. They have caused damage to my nerves, digestive system, brain, heart and lungs. I've suffered a mini stroke. Every year I go for a check on the aneurysm that sits below my heart. There is scar tissue in my lungs from the many lupus flares that have attacked them. Lupus has destroyed the nerves in my feet and legs. I can no longer feel anything from my knees down. Doctors recently determined that the nerves are dying from the tops of my thighs down. There is nothing medically that can be done. 

And finally, for the past seventeen years, I have suffered with all the loss, extreme pain, sadness, side effects from medications, hospital stays with only one visitor, countless ER trips, etc. without any family. I lost the last member of my family when I was 35 yrs. old. All of my aunts, uncles, only sibling, parents and grandparents have passed away. Most people would say, "You are not alone. God is with you." I have grown closer to God more over these past years because He has been the only one to stand by me. But I have also learned through this horrible disease that people would rather pray for you than love you, say things like "You are not alone, God is with you," as they go home to their loving families. I have learned that feeling accepted and loved at church is a whole different story. And if you don't feel love and accepted at church, isn't there something wrong?

I am a human being who is alone. I am suffering. I am sick. Don't judge me. Accept me. My home is not spotless. I am not the person I use to be.  I'm too sick to keep explaining over and over again why I look okay on the outside when I'm suffering on the inside.

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