Tuesday, July 25, 2017

Surgery Wednesday

Have to be at St. Joseph main hospital in Lexington by 7:30 a.m. No food after midnight. But now they allow you to drink a carb rich liquid to keep you hydrated. So four packets and water tonight and two packets and water chaser around 4:00 a.m. Wednesday. Will float away! This is suppose to help you recover much better. We shall see. 

With lupus you have a tendency of flaring with anything invasive like surgery. Last time I had surgery I was in the hospital an extra two days because of fevers. Just par for the course. 

Sad thing is I've spent the past few days getting ready to go to the hospital. You think I was going on vacation. What to pack for hospital? What to pack for rehab stay? Set up apartment for return, i.e. raised toilet with handles, hand held shower head, bath mat to prevent slipping, washing clothes and sheets, making sure kitty food is available. 

Wish I were going on vacation instead of having spinal sugery. 

But it is what it is and I don't have a choice. If I put it off I may not be able to walk at all according to the doctor. The pain is horrible now. Just can't seem to endure it. I'm always in pain from lupus, but add on the back pain and I just want it to go away. I know the pain will be bad at first, but if there is hope of it subsiding I'm all in!

I'm tired. Stressed. Dreading it. But I do have peace in knowing God holds me in His hands. What more could you ask for?

Monday, July 17, 2017

Sharing the South

I was raised in Southeast Alabama. It was and will always be my home. Recently I stumbled upon a website of a southern writer who happens to write stories about people he encounters in the area where I grew up. Reading his stories have helped soothe my homesick soul. Just wanted to share them with you.


Saturday, July 15, 2017


One word sums up flares - pain! From being in the heat for two days, stress, lack of sleep, yo-yoing temperatures with rain mixed in have caused every joint to hurt, my body to swell, and my back to hurt even more. I feel like I'm in a pressure cooker!

I go in Thursday for presurgery exam and spine class. My back surgery is the 26th. I look at it with dread and hope. Dread for the long road of healing, rehab and being away from my kitties. Hope of being able to walk the neighborhood again and do so without fear of not being able to get back home. Hope of less pain.

For now I take one day at a time and continue to hope. If you suffer from lupus and have family support, please be thankful. I've been doing this alone for over twenty years. If I need something, I have to pull myself up and get it. Daily activities I took for granted I now struggle with all of the time. Sometimes dishes sit in the sink for days because the pain is so bad I just can't stand up and wash them. How I wish I had a dishwasher! I finally washed clothes last night. They had begun to spilled out of the basket. Sitting outside in the shade of my porch has become very difficult because the heat literally makes me sick. Sunlight does also. Many days I wish I had a family. Wishing doesn't make it come true. So when I awaken every morning, it takes a while before I can move well enough to get up. Then my day is surrounded with trying to accomplish something.

I may not look sick to you, but let me tell you the pain is overwhelming. I spent the last two days having fever of 103 degrees. Too much heat exposure and stress from the days before. I'm wiped out.

You don't know what someone is dealing with on a day to day basis. Don't judge. Life is hard enough for those night fighting disease. Instead do something to help. Sometimes I just need to know someone cares and will listen.

Heat will be soaring into the mid nineties on Thursday. Feels more like Alabama weather than Kentucky. Can't avoid it due to pre-op appointment. I'm already stressed just thinking about it.

I realize this is just a shirt, but the message on it fits the lupus fight. Flares are no fun and we can't always control our environment.

Good From Bad Situations

I know God brings good from bad experiences or situations. Friday He did so for me.

On Thursday I had my follow up from cataract surgery. The doctor told me Medicare would cover a pair of glasses after this surgery and since I had bought a new pair just months before my first surgery and didn't have the money for another pair, I decided this was a benefit I needed She sent me to Walmart because they were Medicare approved to do cover them.

A man took my info and card and went to call Medicare. He returned and told me they couldn't help me and sent me to Bluegrass Vision saying they would take care of me.

I asked BV if they were Medicare approved and could they provide my glasses. They said yes so I proceeded with the paperwork. After waiting for the doctor to come back into the waiting room he informed me that I would have to pay $120 up front and file Medicare myself. I said no and left. It didn't sound right.
I returned home and called Medicare. They said BV had tried to take advantage of me and informed me of a place that would cover my glasses, but I would still have to pay 20%. I called my doctor's office to let them know my Walmart experience. She said they've had problems with the man there before and we're shocked about BV. I shared my experience because I didn't want anyone else to have the same problems. I called Walmart and spoke to a lady in Vision center and found out that they do take Medicare for glasses after cataracts. She was glad I informed her of my encounter. Top it all off with it being the hottest day so far. Heat index was 96 in Kentucky. The heat causes me to flare and two days in the heat made it worse.

The next day I went to Ditto and Music in Nicholasville. They were wonderful! I explained to the lady what happened. She not only didn't charge me for no line bifocals, she didn't charge me a penny for the glasses. I was blessed beyond measure!

According to a friend, they look at their business as a ministry and not just a money making business. I pick up my glasses on Monday.
Turns out the lady who took care of me was told she possibly has lupus. She needed to talk with someone and didn't know anyone who had the disease. I was able to share part of my experience of 23 years with her and hope it helped somehow. Thankful God intervined! Thank you Heather!!

Don't believe in Him? You're missing out!!

Wednesday, July 12, 2017

Just Random Thoughts

I lost my entire family by the time I was 35. Graduated from college one day and was a full-time caregiver for my mama until she died eight months later. My only brother died at 46 of cancer. My Daddy followed him two years later. I became chronically ill soon thereafter. That was twenty years ago. Not a day passes I don’t think of them and miss them terribly. If I’m not going to the hospital for treatment or to various doctors for checks, surgery, etc., I’m thankful for the rare moments someone spends time with me. It doesn’t take much for something to spark a memory and my heart wrenches in pain because I miss them so much. I believe when we lose someone we love a little part of us goes with them. Makes room for compassion for the next soul who lost a family member. We’re a family of sorts tied by loss and grief we never get over. We just learn to live with it as each day passes.

Heat has really surged in KY. Walking outside to feed the kitties seems to be too much. Reminds me of the heat of Alabama. Humidity is up there with the temperatures. Boy do I long for winter! 

Wednesday, July 5, 2017

Summer Flowers

Over all the years I've been in and out of the hospital, I've never received flowers. My friend  Phil and his girls brought this bouquet to me during my Benlysta infusion. Made my day.

Saturday, July 1, 2017

Random Thoughts

I hate the internet. It has taken away the simple kindness we once took for granted. Like beautiful colored envelopes with love and encouragement, with tears and news all wrapped up in heart and written on the page or card tucked inside. I truly miss real letters and real cards. It showed someone thought ahead to remember you. The internet is just another way of making others feel invisible.

I am always amazed at how some people think. They never call or write, but contact you only when they are in town. When you see them, a handful of words are exchanged. Their good deed done, you don't hear from them again unless they come back to town a year later. Not what I would call a friend. Sometimes it is better to shut the door and keep looking forward.

Blessings. I hear people say over and over again how God blesses them richly. They are married, have children and grandchildren, have a great job, etc. I can't help but wonder if I am considered blessed because I have none of those things. Most would say no. I guess it depends on how you measure being blessed. Material things are just that - things. They decay and rot. Children grow up and leave. Spouses tend to have twice the trouble in life.

I was able to stand in the shower and put on clothes today. I could pull myself up from the bed without struggling. I was blessed by three kitties this morning. In the past I was blessed with strength and ability to care for my dying family members. I am blessed today because I have a roof over my head, food in my pantry, and clean clothes. And I'm blessed because I have a handful of true friends who stick by me through hard times and good. So am I blessed by others standards? No. But the only standards that truly matter come from the one who blessings come from - the one true almighty God. In His eyes I am blessed.