Friday, August 31, 2012

Playing it Smart

Today I was so thankful for the kindness of a friend. Shawnee allowed me to tag along on her grocery trip this morning to Nicholasville. I took the opportunity to stock up for the freezer and fridge. No more "bad choices" of walking across Wilmore in the heat and Sun. I knew better, but wanted so badly to beat this disease once and for all. Instead I found out the truth. Systemic lupus is affected by the sun and the heat. I have royally paid for my antics these past two days not venturing out past the front door. With swollen joints and fevers, I've spent more time in bed than sitting up. Walking across Walmart was a determined feat in itself. 

I learned no matter how much I change my thinking about this disease, it still controls my body. No matter how positively I think, I cannot think stupidly. Even though I hate taking all of those meds, they reduce the pain, swelling and other side effects. I'm stuck with them or will suffer. Personally, I don't like suffering, especially when I have no one to help me when I'm down. Believe me, I'd train Rascal if I could. 

I've learned overdoing it all in one fell swoop brings more pain than I can bear. It hurts to sit. It hurts to lay down. I cannot sleep. I cannot rest. I simply want to unzip my body and crawl out!

Even though I've suffered from this horrible disease for 17 years, you'd think I'd gain some wisdom by now. Instead I just keep making the same stupid mistakes. The only difference is this time the mistakes literally make me fall flat on my face. 

For all of you people who believe thinking positive will change it all, trust me, I've tried it. My body has been ravaged by systemic lupus. It doesn't work. I've mourned the loss of my heath. It has nothing to do with having lack of faith. In fact, my faith has never been so strong. Without it, I wouldn't be here now sharing all of this with you. 

Through sharing this update with you, I've had to stop several times, walk around, rest my swollen arms and hands, cry in pain. But I'm still here and there is a plan for my life. It may not be a grand plan where my life changes the earth, but God has a plan for this season of it. 

Time to return to rest. I want to see the Blue moon before turning in for the night and praying for release of this pain. Armed with OFF bug repellant and a new bug light in the outside light socket, I'm ready to fight those KY mosquitoes who have been feasting on me since I moved here. Boxes are still in corners of two bedrooms. One bedroom has an unpacked box on the bed. Tomorrow I will try again to accomplish putting those things in their place. I will also try to hold a pen in my hand to write thank you notes to those dear souls who helped me move to KY. 

Each day is a gift. If I accomplish one thing, I am thankful.

Wednesday, August 29, 2012

Way too Soon!

I set out to go to the college yesterday. It is only a few blocks. But for someone who has no feeling in their lower legs and feet, you have to concentrate hard to walk. After I started down the road, I realized the heat was a bit too much for me still. No humidity, but direct sunlight was not a good thing.

Made it to the semi circle in front of the college and rested under the trees for awhile. Felt like I was 100 years old as I watched those kids heading to class. The chiming of the hour was a soothing memory reminder. After awhile I headed to the new library on campus. Had to go to the help desk downstairs to get an ID for Alumni and a student walked me down there. She asked me every question under the sun. Gosh, was I ever that naive??? I wanted to stop her and say, "Listen kid, enjoy this happy time of your life, bright and full of hope. When you leave here and life grabs ahold of you. It will beat everything out of you." Since I hadn't received my ID card yet, I didn't think it was a good idea to say those things. I left her intact, innocent from the world. 

I walked through the library, sat in the big plush chairs reading a Writer's Digest, rested a long while and left. Dropped by the dollar store to pick up some things and went by the chinese restaurant to pick up dinner. By then I was way past the point of wondering if I could make it back. But I had to push on. So I crossed the road again and sat back in the semi circle under the trees to rest again. It was so hot (but no humidity). Two college kids found a new way to "hang out" together. Amazing. We got into trouble for climbing trees, but they can have hammocks??

 Well so many other things have changed. They can wear shorts after 4:00. For us, it was wearing pants after dinner. I liked our rules better. Of course, I walked into that library today wearing shorts! It has been a long time coming!

I headed home praying God would give me strength to make it home. Stopping along the way was not an option anymore. No more benches. By the time I reached my driveway, I could barely breathe. I dropped my bags on the porch and landed in the rocking chair. I was so hot, in so much pain, couldn't breathe. Not a smart thing to do!! 

I learned the hard way - It is STILL too hot for me to go out in this weather, too far for me to walk across town, my body is still too weak to handle a great deal, and I have to stop. After resting for a few hours, I started moving those moving boxes to the end of the driveway for recycle to pick up on Wednesday. It was a large stack. People passing by me, but no one offering to help. Broke my heart. Where is the Wilmore love and kindness? By the time I moved the last stack, I sat in the rocker and cried. I had finally reached the end of my breath, the end of my soul, the end of my hope for the day.

Sunday, August 26, 2012

Coming out of the Darkness

Even though Rascal kept me up all night last night, I feel as though I'm coming out of the darkness. The past few years of my life have been so difficult living in Dothan. Without my best friend, I would not have made it through.

Today I got up with peace. Peace that is overwhelmingly cleansing. One step at a time. I know this. I've taken one step forward ten back way too long. It is time for moving forward. This horrible disease is still attacking me. The stress of the past few years, the stress of the long distance move, the flare that has been so physically painful have all stopped me dead in my tracks this past week. My mind says "Walk all over Wilmore! You are home!" My body says, "NOT YET! You're still healing." 

But a great deal has fallen off my mind. I can dream at night again. I remember my dreams. I have waited so long for this blessing. As each piece of negative destruction falls from my mind, body and soul, healing takes place. Thank you dear God for your love and blessings. Thank you for friends who are loving and kind. Who have helped me in ways I could never imagine. Thank you for reminding me people are still compassionate. I know people are people no matter where you go and I've met a few here with the same attitude, but the kindness, compassion and love far outweigh those with the world's negative, hateful mindset. 

Thank you, God, for all of this would be impossible without you.

Monday, August 20, 2012

A Lupus rash

Just wanted to show you what a lupus rash looked like. Had a big one show up on my move.

Tuesday, August 14, 2012


It has been crazy here. Struggle to pack boxes. Just me and Sandy. I guess I'll never understand why people don't offer to help when you literally beg for help. It is the day before loading a UHAUL and I STILL have boxes to pack. I'm exhausted....not the exhausted where you fall into bed from working a full day. This exhaustion feels like being rung out like a wet rag. This is Lupus exhaustion. This morning I woke up with a fever, swollen joints, and very bad pain in my body. I've already started swelling again. My doctor says the swelling is from the illness and from the summer heat combined. She can't give me anything to alleviate it because it would pound hard on my kidneys. So I have to walk around like the Pillsbury doughboy. Oh joy! Just makes me want to wear a sign around my neck that says the following:

"I'M SWOLLEN FROM THE HEAT AND LUPUS. LEAVE ME ALONE!"  Of course, people always think if you are large, it is all fat and it all comes from over eating. Not so. Try taking 20 different medications, fighting a disease like this and not gain weight. I double dog dare you! Add to it the swelling. Let's see how you look in a few years.

I'm numb mentally. I've done everything I can about setting up electricity, phone, etc. from here. The rest has to be done in person. My hot water is gas and has to be done in person. So cold showers on Friday until I can go to Nicholasville to turn on the gas. Still have to transfer the water into my name. Open a bank account in Wilmore. Stock the pantry. All this has to happen on Friday. Businesses are closed on Saturday. 

Should be interesting with Rascal traveling so far. He's never gone anywhere except across town before. I'm not giving him a tranquilizer. I did that with another cat and it took him three days to come out of it. Will just take it as it comes. 

I'm tired....this is my last entry until sometime next week when I get internet again. Hopefully I'll be able to sit up at the desk.

Wednesday, August 8, 2012

Another Day - Another problem

When the rain came in today, lightening must have hit my air conditioner. Now it is running on fan only. I called the office. Will see if someone shows up to fix it. I'm upstairs. It is HOT in here! I'll be so glad to get out of here.

Tuesday, August 7, 2012

Woke up to Rain

But the rain was in my kitchen and dining room. Happened before, but in the dining room. These are brand new apartments. When I went to the Kitchen, I slipped in a puddle and fell on my butt. BIG puddle under a crack in the ceiling. Big crack over the dining room table. The guys came. Said they couldn't do anything until it stopped raining. Get a bucket. ONE more week and I won't worry about that.

Thursday, August 2, 2012

Not Much Progress

While packing boxes Wednesday, I pulled something causing some pretty bad pain. Just like dominoes, the pain progressed down my body. Today I didn't get one box packed. The pain was just too much. Swelling was, too. Days keep ticking off...and so does the stress....

Wednesday, August 1, 2012


I'm overwhelmed. Packing boxes alone. Cost of the UHAUL will be $700 not counting gas along the way. Cost of the movers to pack it will be $400.00. Gas for Sandy's car. Food along the way. Sometimes I think it would be better if I just died instead of tried. 

I'm overwhelmed. I wish I had family, but I don't. Being alone is horrible. I'm tired. I'm sick. But I have to be out of here by the 16th. So I push on and pack. But I pack alone because Sandy chose to have gall bladder surgery last week because she wanted to get it over with before she went to London in September. 

God help me. I can't do this alone.