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Thursday, August 28, 2014

Strength Increased

Every morning I've awoken, I have felt wrung out, exhausted, bad. Today once the bad wrung out feeling passed, I felt more like a human being again. Hope of Benlysta working? I surely hope so! 
Once I get through the multiple side effects, I feel better. This time it just took longer. 

The heat and humidity now play a huge part in my flares. I've never been a fan of summer, especially August, but it reminds me the suffering summer flares will soon end once Fall air comes. I've been inside for ten days now. Haven't seen another person in ten days (hardest part). But when I open the door to feed the kitties and get the mail, the heat wipes me out. I keep reminding myself Dothan is in the high 90's with extreme humidity, but my body doesn't seem to understand. Low 90's is still bad. 

Rascal still keeps his spot in the open window enjoying direct sun and heat. What will he do when winter sets in? Yell at me I'm sure. 
His body is adjusted to the extreme weather conditions. Me, not so much!

As I finally woke up from my side effect fog, I realized how very messy my apartment has become. If I don't clean it, no one else will. If I am sick, I can't do it. I didn't realize how much this medication has pushed me down until I looked around. 

Watched the Emmy Awards Monday night because Kevin Spacey was nominated. He was using a cane due to a tennis injury. All I could say was "Welcome to my world!" He will heal and put the cane aside. I won't. I'll be using a cane forever. 

Still have hope this medication will work. I won't go for another treatment until September 12. I see the rheumatologist the Monday before. My last regular MD appointment showed I'm anemic. Surprise! Oh joy. When you have to make a choice between buying food or medication, you can't exactly eat well. 

Just taking each day one at a time. No one is promised tomorrow and I know while suffering from this chronic life threatening disease my chances are less. Yet it does not make me afraid because I know where I'll be once I leave this worn out body. 

Stop and appreciate every part of your day. The things you take for granted today may be gone tomorrow. 


Being Thankful

I've decided to appreciate three things about my life each day.
1. I  am thankful for the ability to stand in the shower today. Most take every day actions for granted. For me it is a struggle to accomplish this task because of my lupus flares.

2. I am thankful to have quality friends. Numbers don't matter as long as you have someone to love who accepts and loves you just as you are.

3. I am thankful for God's creatures and the joy they bring. My stray cats, with their unconditional love, consistent presence and the lessons they have taught me. Many days pass without me seeing another person. The cats come by for food and stay for love and a save place to rest. If only people would care as much as those furry four legged friends.

Life is hard, especially when you are totally alone in the world. Add to it the shadows that hang over hoping for a better life, one where taming a shower or cleaning house does not feel like an impossible task, or needing to believe you are still a good person with a compassionate heart having so much love to give. When I was younger I saw myself as ugly, unloved, hopeless. When you have a mother who tells you on a daily basis "I wish you had never been born, I hate you, and no man will ever want you," you tend to believe it. I see that woman  my mother described.

But for me to have a quality life, I needs to start with the woman God sees in the mirror. Yrs I have a chronic dangerous illness that controls my life, but it does not control my soul.

Just recently  a woman flippant said "You don't look sick." Have.g heard it so any times before from other rude people, I decided to say what I always wanted to say ."Really? And you don't look stupid.,"

Even though it was the wrong thing to say, it surely felt good!

I am no different than any one else. I long to be loved, to find my southern gentleman to marry, make a difference in all lives. The only difference is I struggle with systemic lupus and other illnesses. I've been sick for eighteen years. I've waited to die for a long time. Now I want to live with all the joy GOD has planned for my life.

It starts with being thankful.

Monday, August 25, 2014

Just Another Day

It seems like every day is just the same. I haven't seen another person in seven days. I've a friend who would think that was heaven. For me it is overwhelmingly sad. You see she has fait, friends, and coworkers. She has no idea what it is like to be alone in the world.

So I decided to move - to go back to a place where I knew people to be kind, accepting, and loving. After two years of living in the one place I knew I could be loved, I found rejection, loneliness and emptiness. I found senseless drama, spiteful criticism, and misguided opinions. I experienced words with no actions, people with no hearts, and life with no purpose. And the worst part is this town takes such pride in being a loving Christian haven. Turns out it is no different than where I used to live. At least I wouldn't be alone long stretches of time. It seems selfish, judgement al people are everywhere.

I had a discussion last week about death. Took the opportunity to say the one thing that bothers me about dying is my body not being found for a long long time. She said, "You can always call me."

I said, "I can't call you if I'm dead!"

Her solution was to call ahead of time if I am feeling deathly sick.

Do people know that I am sick? Yes. Do their actions show they care? No.

So the next time you complain about your husband, child, parents, remember how horrible it would be if you did not have them.

The hope I have is not in people. It is knowing my purpose come from God.

Friday, August 22, 2014

New Bodies and a New Home

Looking forward:

Thursday, August 21, 2014

Always Hope

Every year I plant sunflower seeds, but they never come up. This year was different. Just a good reminder that you never know what a day will hold.

Wednesday, August 20, 2014

Feeling Discouraged

If you read this post, please share it with friends. I'm still trying to raise funds to pay for this extremely expensive Benlysta medication. So far away from my goal.

It would mean so much to me!

Tuesday, August 19, 2014

Pushing Forward

It has been a very painful few days since my Friday INFUbYSION. The third INFUSION knocked the wind out of me. I have barely been able to walk from room to room. More time has been spent in bed. These are the Times I feel so alone in the wold, have no purpose and ask God why I am still on this earth.

Today was an early one for me. Early to the doctor. He's a good man. Encourages me to keep going and tells I desperately need a support group. Well I  know this, but you can't make people care.

The pain is a 10 tonight. Everything hurts. So many things I need to do, but am too weak to do them.

I wanted to plant yellow roses so that I could bring them inside to enjoy during this hot summer. Instead I have been bed bound, hospital bound, and experiencing lupus flares. No planting this year.

So when I am stuck in bed, I read and watch movies. There have bee three Kevin Spacey movie on the past two days. I especially enjoyed "Beyond the Sea." Kevin singing and dancing. Makes me smile. Then I go to sleep early only to find him starring in my dreams. He even brought yellow roses.

When you don't have a quality of life, dreams make up for the empty places. Thanks, Kevin, you have brought joy to my life.