Tuesday, May 28, 2013

The Heat is Back

It has been a lonely three days. The only person I've seen has been the lady who delivered the last of my medication this morning. I had hoped the lonely part would be different in Wilmore, but it seems that people are the same no matter where you go. I'm thankful for the friends I've made here and cherish them. I only wish I could have a "normal" life like other have - a life where I get up in the morning, get dressed and go to work, go out to dinner with friends with no thought to an extreme budget, no worry of anyone passing judgement on me because I'm sick, being able to go outside when it warms up instead of being trapped inside because the heat makes me physically ill.

Life is different for someone who has a chronic illness. It is worse when you're disabled from it. People judge you. They put you into their own categories: 1. you don't look sick therefore you must be lazy.
2. You must be contagious so I'm not going to touch you. Just look at those sores! 3. Single, never married, must be something wrong with you. 4. Not working: can't be because you're sick. Must be on welfare. 5. Your house is messy - why don't you clean? Lazy!

None of the above are true! However, people can be cruel. So easy to pass judgement instead of just loving someone for who they are. So easy to label someone instead of reaching past the pain they must be suffering. So easy for someone on the other side, but not so easy for the person who is suffering.

Once you live a life of being judged and labeled, you tend to back away from people. It hurts even though the broken heart heals. Scars just keep piling up. The worst pain in the world to me is standing in the middle of a large group of people where no one says a word to you. It hurts.

Look at the labels: 1. What I may look like on the outside doesn't match the damage lupus has done on the inside. Want to see my 18 yrs. of medical records? So many times I want to say "You don't look stupid either."
2. Systemic lupus is not contagious. You are more dangerous to me than I am to you! My immune system is compromised when your germs are passed to me.
3.  Single, never married - spent my life as a teacher and caregiver to my parents and brother - buried them before I was 35. Lost my own health to illness. Need I say more?
4.  Although systemic lupus is an extremely expensive disease (tons of meds, doctors, etc.), I am not on welfare! So stop judging me.
5. For a couple of years my health was so bad, someone came in to help me clean. Now I don't have that help. I function two hours a day. It takes all the strength I have to maintain. I am thankful when I can stand in the shower. I am thankful when I can wash dishes. Things a normal person takes for granted takes extreme effort for someone who has this disease. If you don't like the way my house looks, HELP me.

Sometimes I wonder what God must think about His children. They are the most harsh in judgement. They would rather gossip about a person than reach out and help them. When I was at my lowest point with little food, someone told me "I'll pray for you." I'm thankful for prayers, but I believe when someone is hungry, you feed them.

Through all the bad things that have happened to me, the horrible ways people have treated me, the many tears I've shed through this disease and the experience with it, I've learned compassion. When someone is hungry, I'll give them food. When someone is in need and I have some money, I'll give them help. Praying is important, but action is important, too. Put feet to prayers. I've never been in a position to worry about social status or reputation. The only one I hold myself accountable to is God. If I fail to help someone in need, I cannot live with myself. I know first hand how it feels.

I am so thankful for friends who understand, too.

The heat is back in KY. I am physically miserable today. Had to turn on the air. Vasculitis has stopped breaking me out. Now I'm breaking out in lupus sores. I can't go outside and walk. It has reached a temp that is far too warm for me.

One day at a time.

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