Tuesday, March 31, 2015

Easter Memories

I think back on Easter memories growing up. My mother always made a big dinner at Easter. My brother and I would come home from church with wonderful smells rolling through the small house where we lived. Homemade biscuits, ham, homemade mashed potatoes, peas, etc. etc etc. 

I think back to the last Easter basket I enjoyed. I was six. My father decided I was too old to receive another basket after six even though my school friends still did many years after mine stopped. Even though Easter isn't about baskets and candy, to a young child it really made an impact to feel left out. 

Now as it was then Easter is a family holiday. I'm thankful to have the memories of many many Easters past.  

Spring Sprung But I Didn't

It was 74 degrees today. Felt the warmth for a short time as I stepped outside to feed the kitties. Just didn't have the desire to stay. 

Another sleepless night as I woke up at 2:00 a.m. and never went back to sleep. Tossing and turning is not very good exercise. My mind got a good work out of worry. Still being hit with bills from Benlysta. The total now reaches $1200.00. Even though the med did not work, I'm glad I tried. There was hope for awhile. 

My spirits are low. I feel as though I've given up on everything. Keep asking myself why bother? Truth is if it were not for the kitties, I'd never get out of bed. 

The nights are still in the 30's so it makes it easier to curl up underneath the blankets and pray for sleep.  

I'm tired. Very tired. 

Saturday, March 28, 2015

THank you Lord for Sleep!!

Anyone who suffers from systemic lupus knows how bad insomnia is when it sets in. If it is due to the pain, stress, joints swelling, etc. or just because insomnia is a close friend to lupus, when it comes it stays like an unwelcome guest.

Insomnia has been an unwelcome guest here for over a week. Mine came after the heart cath. Then it set in again when I had an attack on my abdomen.

But last night I slept. Neither cat woke me up. Pain did not wake me up. It was a most welcome gift. Along with sleep came a wonderful dream. I dreamed someone sent me a check for $25,000.00. I used it to move back home to a place that was safe, quiet, warm in the winter and cool in the summer.

What excitement ensued as my best friend flew up to help. We hired a moving company to move my belongings, were able to clean my apartment together, pack up my two house cats and head home. I woke up in such peace. The entire dream was divine intervention. No stress, no doubt, no struggles. Just peace in knowing what I was doing was for the best.

And my kind neighbors next door vowed to feed and look after Buddy and Tom, who refuse to come inside to be sorry house cats.

Everything fell into place and the weight of my worry rolled off my shoulders. I would be home. Have better health care than I did here, would be able to call someone if I needed help instead of suffering alone. I would be close to the hospital and easily able to get medical attention instead of suffering and hoping to wake up in the morning.

I was at peace.

But it would take divine intervention for this dream to come true for I cannot afford movers, money for deposits of a new place, or even gas to get home.

But my heart wants to go home so badly. As it is now, I have to cancel two doctors appointments because I cannot get to Lexington. Just hoping to find one person who will help me get to my rheumatologist appointment in May. As it is I'll be walking to my GP appointment.

Life is getting to be too hard. What a fool I was to move away!

Friday, March 27, 2015

Still Winter

Even though the calendar says it is Spring, it is Winter in Wilmore as the cold weather blew in more snow showers this afternoon. Temps are going to drop below freezing the next couple of nights. The only way to survive here is to crawl under the blankets and stay there.

I'm still reeling from the abdominal attack from a few days ago. Still unable to function well. And again the cold weather swooped in to bring more pain throughout my body.

Still winter in temperatures. Still winter in precipitation. Still winter in the lowness I feel inside. So many days I get tired of trying. So tired of struggling. So tired of being sick and tired.

Just hoping for open doors once again. Hoping for life. Hoping for joy. Hoping.

I feel so weak today and the one thing I need more than any eludes me. I need sleep. I need rest. I need love, encouragement, to feel as though I belong. Pain keeps me from sleeping. Being alone in the world keeps me from the other needs.

I simply cannot do what I use to do. Because I am unable to function like a normal person, social functions are unattainable to me.

It is silent. Cold. Lonely. All I want to do is close my eyes and run home. I want to crawl into my old bed at home, pull the covers over me and sigh a big sigh of security and comfort. It is only in my dreams I can go home again.

I talk to God every day for He is the only one in my life. I pray for love, encouragement and belonging. I pray and beg for a way to go home. Hoping for an open door, provision for moving, a place to call home again.

I hope for it is all I have now except for the peace I still hold in my heart.

Wednesday, March 25, 2015

Bad Night

Last night I experienced another horrible lupus attack. I woke up with abdominal pain and swelling and a fever of 103 degrees. It was at least two hours before the fever subsided. When it did, I pulled myself up and sat on the sofa in hopes the pain would go away. So bad! I cried for an hour.

When Little Bit heard me crying, she crawled into my lap and purred in order to sooth me. The best part about this is she has never sat in my lap before. It was the first time.

When I was able to crawl into bed again, Rascal crawled under the blanket and nestled into the small of my back. It was soothing to me to know he, too, cared.

I just can't help but wonder why people can't be as loving and kind as animals. Is it because they are so self absorbed that they won't stop and listen for those who are hurting? They discuss the situation instead of helping the hurt.

I have been weak and bed bound since last Tuesday night. The heart cath took more out of me than I realized. I haven't seen another person. No one locally has called to make sure I am still alive. It scares me to know if something happened to me, no one would find me for a long time.

I have thought about getting a medic alert system where you can push a button when you need help, but with the increase of my medication costs, I can't afford it. It would be a comfort to know someone was watching over me.

Even though the heart cath is over, the questions are not. So I'm back to see the cardiologist and pulmonologist in April. I'm still having chest pains and shortness of breath even while I'm in a seated position. My nails are curving over even more. No questions were answered in the multitude of tests.

I'm still feeling severe pain in my abdomen. So afraid to eat something, but know I have to just to pad my tummy when I take the meds at night. Still weak, but have to take a shower. The cold air comes back tomorrow. I know there is always a cold snap before Easter and this is it. When I stepped outside on the porch this afternoon to feed Buddy and Tom, I realized how warm it was. Inside I'm still under an electric blanket, wearing long sleeves and gloves. It physically hurts to be cold.

I won't be able to withstand another cold winter like this past one. I won't be able to withstand Thanksgiving and Christmas alone again. As bad as Alabama was, I did have someone coming in to help me twice a week, was able to keep my fridge full, and never had to spend the holidays alone. I had a doctor who went above and beyond to make sure my medical needs were covered. They say hind site is 20/20. In this case it was. If I had the money to pay for a moving company, I'd go back. Until that miracle lands in my lap, I'm stuck with being alone, struggling with the smallest things like getting myself to the grocery store and dealing with doctors who don't seem to care, literally freezing to death.

Thursday, March 19, 2015


I'm in recovery mode since Tuesday. It was a long day! Had to wait a few hours before the heart cath. Once they took me back, it was a Laurel and Hardy episode. They prepared me for the procedure while the doctor could not be found. Pretty bad when they have to page the doctor over the intercom to show up!

They gave me the medication to relax me way before the doctor arrived so I felt everything. The medication had already worn off. I told them, but they did nothing but proceed.

She did two incisions: one for artery and one for vessel. Looked at the pressures in the right side and searched over the left side for blockages. Pressures were okay. No blockages. I guess what she thought she found in the previous test was not recognizable once they went in.

Once I was taken back to the room, I had to lie still for over three hours. Lots of noise around kept me from resting. My mind just raced with worry. Close to the end of the the three plus hours, the cardiologist came in to tell me the results.

Like all tests, if it isn't A or B, it must be C. In my case that means lupus damage and nothing they can do about it. My nails remain clubbed and will always be so. I will have shortness of breath every time I try to do anything. Walking will continue to be an issue.

Before I headed home the nurse gave me instructions.

"You must have someone stay with you for 24 hours."
"I don't have anyone to do this."
"Be sure to take the phone to bed with you. Watch for swelling or bleeding in the incision. If it happens, call 911 immediately. You can bleed out from the location."

So did I sleep? Nope. I was afraid to do so since I was alone. Besides it hurt so terribly much I could barely get on and off the bed.

It has been a restless two days. When I turn over or bend over, the pain is pretty bad. My mind is still restless and I feel stressed out.
The rain has come in and mixed with the cold temperatures to cause my joints to swell and the pain to be intense. Thus is the joy of having lupus.

The hardest part of dealing with this horrible disease, despite medical tests, multiple doctors, multiple meds, painful suffering, has to be doing it alone. I never see another person. Rare when someone calls to check on me (unless it is a friend in another state).

I'm tired and worn out just wishing for a normal life. Instead I'm given illness, loneliness, and struggles.

I know we all have our struggles, but having struggles with a chronic debilitating disease makes it so much harder. So is dealing with people who don't care enough to listen.

Oh Spring, where are you? Tomorrow is the first day. It is suppose to be 54 degrees here which means 44 degrees in my apartment. This winter has taken a harsh toll on my body, my mind and my spirit. I keep looking through the clouds hoping for the warmth of hope.

Friday, March 13, 2015

Medical Tests Update

Cardiologist found something else in my test. She is doing a heart cath on both sides Tuesday morning at St Joseph East Hospital in Lexington. Another doctor will stand by in case stints are needed or other procedures done. May be an overnight thing depending on what they find. 

Am I scared? You bet! I have four days to adjust to this news before it happens. Once it sinks in I'll be okay. Just the shock of it all. 

Irony of irony, I found an error on my paid in full life insurance policy last week. They had not changed beneficiary since my brother died. I had changed it, but they failed to do so. I received the form to correct it yesterday and today I had to walk to the college to find a notary public. Now the college has updated most of their buildings with elevators, but not the Administration building. The woman I needed to see was on the third floor. I walked a mile to the college and then had to climb three flights of stairs and turn around and do it all over again. I could barely breathe just walking to the college. Yes, I agree on the diagnosis: there is something wrong with my lungs! Thank you so much, systemic lupus! It was hard enough walking on numb legs and feet in the painful rain!

I thought about the kids taking their finals and preparing to go home for Spring Break. All I wanted to do was go home, too. I wanted to pack my bags, catch a bus (like I did back then), and go home. I wanted to walk into the back door, smell my mother's southern country cooking, sit at the table with my mom, dad and brother for supper, and crawl into my old bed where I felt safe and secure. No matter how much we struggled, no matter how much we fought, how many problems to overcome, home was home. It was a place where I could walk into the door and feel "AHHHHHHHH!" as the problems, struggles, bullies, hurts all rolled off my mind and body and out the door. It was home. And I miss it terribly. 

As I walked back home I listened to some music I downloaded from a cd.  It was the Peasall Sisters. The one song that deeply touched my heart was this one: "Where No One Stands Alone"


When I arrived back home with dreams of collapsing into my bed, in hopes of sleeping, letting go, etc., I had a message to deal with instead. Cardiologist office calling with the news. Oh joy!

That song could not have been more appropriate. 

LYRICS: Once I stood in the night with my head bowed low
In the darkness as black as the sea
And my heart was afraid and I cried,
Oh Lord, don't hide your face from me.

Hold my hand all the way, every hour, every day
From here to the great unknown
Take my hand, let me stand
Where no one stands alone.

Like a king, I may live in a palace so tall
With great riches to call my own
But I don't know a thing in this whole wide world
That's worse than being alone.

Hold my hand all the way, every hour, every day
From here to the great unknown
Take my hand, let me stand
Where no one stands alone...

I don't live in a palace or have riches this world says is so important to have. I stand alone where this world is concerned. So I turn to God, the one who loves me no matter what, who comforts me when I am afraid, so sick I cannot lift my head, and I crawl into His loving arms. He listens. He loves. He shows His power through my frailty. I feel His hand in mine. No matter what happens with my heart and lungs, I know whose hand I hold and He will bring me into a new home. His peace is overwhelming. 

I'm getting there. Acceptance is hard especially when you don't have a human being to just listen. But I feel peace and know where it comes from. I am so thankful for that peace. 


Thursday, March 12, 2015


As with all tests, we wait. I called the cardiologist office. She has not checked my test. May be Monday before I know. All I know for sure is I will have a right heart cath and she does those on Tuesdays. 

The chemicals from the test on Tuesday has made me terribly sick. Very nauseous. Painful. Just a reaction. 

One day at a time.

Monday, March 9, 2015

Another Test Day

Tuesday is stress test day. Have to be at the hospital by 9:00 a.m. Since I have problems walking (neuropathy/nerve damage in both legs and feet), they will do a chemical stress test. I've had one many years ago and hoped I'd never have to have another one. But the cardiologist wants to see if there is any damage on the left side of my heart. She doesn't want to do a heart cath on BOTH sides if she doesn't have to do so. Right side is a given. After this test, we will know if she will do both sides at once.

I have never been a fan of medical tests. They scare me. You never know what kind of reaction you'll have until it is all over. As for myself, I'll have to deal with the side affects alone. No one checks on me. I have no choice but to be strong and deal with all of it.

Thankful the sun has come out and melted most of the snow. However, rain is coming in tomorrow. With the rain comes the pain and sometimes lupus flares. Add to this the chemical stress test. Oh I am so ready to be done with all of this.

Doctors don't have a clue as to how hard it is to travel back and forth to appointments, tests, etc. They don't experience it. Just wish sometimes they could put them all on one day instead of having to go back and forth.

This weekend I read an obituary of a lady who was well known in my hometown. She suffered from MS for years. She was a teacher, a writer, a wonderful lady. In her obit they said this, " As a courageous fighter of a crippling disease, Dianne was known by her friends and family as one of dignity, grace, and southern charm."

She was indeed a lady of dignity, grace and southern charm. I can only hope to be described so lovingly.

She reminded me to keep fighting no matter how hard it is to deal with a crippling disease.

Thursday, March 5, 2015


So very thankful for a friend who helped me get to the grocery store Tuesday night. What a difference it makes not to worry about whether there is food in the house during a snow storm.

Yes, indeed, another KY Snowstorm. Tuesday we had rain and 60 degree weather. Temps dropped quickly yesterday and we woke up to snow snow and more snow. Already have 14 inches on the ground. It is still snowing. Our predicted numbers are up to 20 now.

Temperatures are suppose to drop to -1 tonight. Not counting wind chill.

I can't afford the current electric and gas bill. GEESH!!!

Funny thing is temperatures are suppose to rise to mid 50's next week. Maybe we will be on the way to Spring.

This has been a terribly hard winter in Wilmore. With it has come brutal pain and suffering on this lupus body. I'm thankful I don't have to do the chemical stress test this week with the pain already so bad. I'm also so glad I don't have to do the heart cath while it is so cold.

I tried to rake off the front porch with my snow shovel this morning, but the weight of it was just too much. If the mail makes it through today, they will just have to do the best they can here. It is just too much for me to handle.

Little to no sleep the past few days. With temperatures going up and down and the barometric pressure beating up my body, I just can't rest for pain. I hope to curl up and sleep today now that it has decided on one temperature. With a heated mattress pad, sheet, fleece blanket, quilt and electric blanket, I hope the warmth will reduce the inflammation in my joints thanks to the recent lupus flare. I'm exhausted! (Add two cats to the mix of blankets and you get more warmth!) I'm sure worry of paying for the heating bills does not help with stress and the stress is keeping me awake as well.

Not much else can be done around here. Just too cold to move around in the Icebox apartment. I miss my borrowed heater. It worked like a charm.

Suppose to be in the mid 50's next week. Come on spring!

Sunday, March 1, 2015

Winter Woes

Spring is just a few weeks away. Still have snow on the ground here. Still cold. My borrowed heater went back to its owner last week. I am back to wearing a coat and gloves inside. 

A friend said her electric bill is over $300 this month. I am terrified to get mine along with the gas bill. Terrified!! .  Even though my income has not gone up, the cost of living, meds, heat, other utilities, and food have. Not sure I can just juggle food and meds this month.

March is here and another test a week from Tuesday. Afterwards comes a heart cath, return appointments and MORE medication I cannot afford. 

Tired today. Tired of hurting, struggling, surviving. But I go on. One day at a time.

Update - Electric and gas are $200 more than normal. YIKES!