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Tuesday, October 6, 2015

Just Wishing

Today I want to go home. Miracle where are you?

Tuesday, September 29, 2015


Put the window fan in the window tonight. Smells like rain in here. Nice cool breeze coming in. Smells like memories of childhood. Running through the rain and getting soaked to the skin. Good memories of puddle jumping with my fried, Amy, I'd DEcember in KY at Asbury College. Playing and running - something I can no longer do. Today I could barely walk from room to room while using a cane

But for a brief moment I sit up in bed enjoying the sweet smell of rain and cuddling up with good memories Won't have long before the rain turns to snow and bitter cold.  Then the air will reshape and flea, a threat to someone who suffers from lung damage due to lupus. Until the day comes when I can no longer breath, May I go out with the sweet memory of sweet rain and sharp cold clean air running through the last breath I take before I go home to Heaven.

Sunday, September 27, 2015


Knowledge is knowing a fact. Wisdom is knowing what to do with that fact. It is a path that leads to peace.

If you are not a loving person, you do not know the God of the Bible.

Peace is not placidity or positive thinking. The peace of God is first and foremost peace with God.

The God of the Bible is the only true God. Without Him you can do nothing.

Knowing God and knowing about Him are two different things.

You can have what you want , but you may not want what you get. And if what you want is not what God says is proper, you will pay a price for it.

What you believe has nothing to do with reality. Poison kills whether you believe it does or not. 

There is a high cost to low living.

Dreary Dreary Dreary!!

The weather finally produced some rain.  News says we're mid drought in KY. Thankful for the rain, but anyone with systemic lupus knows it causes severe pain throughout the body. 

When I woke up Saturday morning, my entire body was writhing in pain. A friend laughs when I tell her even my hair hurts, but it is true. When you're in extreme pain it hurts to even run a brush through your hair. When someone tries to hug you, the pain is worse.

I was reminded how hard living in KY is for someone who suffers physically. The cold and wet beat the body from inside out. I have to find a way to go back south. I dread this winter more than any. I've fallen several times over the past few months and know the widespread pain hits where the falls did damage. 

I didn't sleep well last night because of pain. It hurts to sit, to lie down, and to stand. So I rotate between the three. You don't get much relief when you can't sleep or rest. 

Saw a play at the college last night. Sitting there in extreme pain did not help. Although the play was wonderful, I was in tears from the pain. None of the pain medications seem to be working. 

The worst part of being so sick is feeling like you're alone. If you are with a group or just a few people and they don't relate, it feels even more painful. I'm no different than anyone else. I simply want to be loved and cared about. When I am suffering it feels like people would rather hang you on a hook somewhere and come back after their fun is over. Weighing them down or getting in the way is no fun. 

I'm sick. I'm suffering. I wish I could unzip my body and crawl out. Winter hasn't even started yet and I don't know if I'll make it through this one. 

Wednesday, September 23, 2015

Fall Weather

Today is the first day of Fall. Still feels like summer. Will be so glad to feel a cooler flow of air come in. There is hope! 

I don't know if it is the subtle change in weather or just another flare, but I'm so wiped out these days. Feel like a wrung out rag. Extreme fatigue is part of suffering from systemic lupus and I've had my share of days with no strength to function. This week is another one with no strength. 

With sleep it is feast or famine. I've had more days with insomnia, too. But the past couple of nights I've been blessed with sound sleep. I'm so thankful for those nights. 

I tend to wake up at 3:00 a.m. It is then I go outside and feed Buddy, my porch kitty. He's always on the porch waiting. Early Tuesday morning I followed the same routine. But this time when I walked outside I witnessed screams in the building next door. Shortly thereafter a vehicle tore out of the drive and flew down the street. About ten minutes later there were several police walking up to the doorstep of the apartment. Funny thing was they parked at the end of the block and walked. Then an ambulance parked behind them and wheeled a gurney down the street. Is this a new way to protect them? Was the issue that serious? 

I kept telling myself, "Okay. This is Wilmore. Things like this don't happen here." 

About an hour later, they were all gone and life settled down again. Sweet little Buddy never moved. He felt safe where he was. 

And unless someone reports incidents in the paper or news, I'll never find out what happened. Nothing reported. Just enough to raise your blood pressure! My stress level peaked and wiped me out. 

How I want to accomplish something this week. Whether to clean a room or sort out old boxes, I wish I could accomplish something. 

I'm still without a rheumatologist and for now I've decided to not replace her. I've just had enough with poor health care and bad doctors. I need a break. If that means I can't get my medications, so be it. 

It is the end of the month and I'm stretching pennies again just to make it. Found out today Social Security will not be giving any kind of COLA raise. Even though the cost of living has soared, we'll have to make it on the pennies we get. Everything has gone up including my medication. I'll be back to choosing meds or food once again. 

Wish the government folks would live on the smidgen of money we get. The amount would change in a hurry!

Time to close and head to bed early. I just can't keep my eyes open. It is only 6:30 p.m. I'm glad I was able to sit up today. Tomorrow is flu shot day. I'm making a point to get one because my lungs are so affected by this disease. Last Winter was so very hard on my breathing. The last thing I need is to add the flu to the mix. I don't look forward to cold weather and the suffering it brings. 

Sunday, September 13, 2015

A Random Thought

I hope it won't become a random thought to those who read it. I saw this quote the other day, "A friend to all is not a friend to one." I know several people who seem to believe the more friends they have, the better they are. A friend to all is not a friend to one. If you spread yourself thin, hit the high points with people in your life, what good is it? Wouldn't it be better to be a true friend to one?

I lost several friends when I was diagnosed with systemic lupus. As my health condition worsened, I lost more. I learned that if you're not usable by the church, no one reaches out to you (personal experience). I learned that people don't reach past their own family most of the time. What happens to those of us who have no one?

Heaven forbid I am not a friend to one. Forgive me if I ever use someone because I don't want to be alone. Life is hard enough.

If I leave this life knowing I had one true friend instead of a crowd posing as friends, I'll be a rich person.

Sometimes finding yourself in these positions teach you how to be a better person.

Friday, September 4, 2015


Sometimes I wish people would listen and hear me.

A friend said she hopes I can find a way to get back to AL. She wants me to be happy where ever I go.

That's not the purpose of getting back to AL. The purpose is finding proper health care for the multitude of health issues I suffer with.

Since I moved to KY, I have gone through two rheumatologist, two MD's, two thoracic surgeons, and a horrible eye exam place. For the past year (or two), I have gone from being somewhat covered with medical doctors to one doctor - an MD.

I have a thoracic aneurysm growing underneath my heart. It was almost to 5.0 cm two years ago. The systemic lupus I've suffered with for twenty years has caused me more flares than I can count. Damage is unrepairable. My vision has worsened so much that I have to use glasses and a magnifying glass to read anything. The plaquenil I take for lupus requires a check up from an ophthalmologist to see if the medicine is causing more vision lost because of the deposit on the back of the retina. I have pre-glaucoma. The last time it was checked was almost two years ago. The doctor and his assistant treated me like I was one of the cattle that run through the massive office there.

The permanent nerve damage in my legs and feet has spread to the top of my hip making it difficult for me to walk or balance. I've fallen three times in six weeks, the last one being last Sunday. I fell off the porch trying to pick up the cat. Late at night so no one was there. I dragged myself to the porch and finally picked myself up.

I'm tired of going through bad doctor after bad doctor. I need stability where medical care is concerned. I don't have it here. Had I known then about KY's poor care, I would have stayed put.
 I had hopes, such high hopes, and they were dashed quickly.

I need to return back to AL for medical care. Nothing more. But am stuck because I can't afford a move and have no one to help me.

I think about so many people in this world who are suffering from far worse than I am. They cry for help, but people ignore them. They suffer. What has happened to this world??? 

Another friend posted on his facebook about an experience he had with a man who was asking for money for food. Since the man didn't leave and go get food immediately he decided the man was not in need. No one knows what is going on with another's life. You're not present in a person's life 24/7 and don't know what has gone on. If you have extra, help someone. What they do with it then is between them and God.

I heard someone say this yesterday, "Don't just say, 'Let me know if you need anything.' See the need yourself and do something about it." Too many times people use "I'll pray for you" as a get out of jail free card to avoid any action at all.  I think it is just as bad to know someone needs help and not to do anything about it.

Today I feel like screaming to the top of my lungs. But then I realize the stress would just cause another lupus flare (on top of the one I've suffered all week) and just make it worse. Besides, no one is listening.