Friday, January 30, 2015

Life is Amazing

As I walked through the living room area to the kitchen, I passed my cat, Rascal, sleeping on the heated throw in the recliner. I just thought, "A cat's life is so hard!"

But just like a cat, a human's life can either be cozy and warm or truly hard to handle. Rascal is loved and has been since he ran into my door at age three months. He has always been well fed, had a clean litter box, given everything I could ever give him and loved beyond belief. He is a treasure in my life. 

If it were not for him, I wouldn't have a reason to get up in the morning. I've been a caregiver since I could walk. Having a mother who was terribly ill ever since I could remember, I spent most of my time taking care of her and her needs up through the time I left for the final two years of college in KY. I returned to care for her, my dad and brother until they died. It is a part of who I am. I am a caregiver. 

Now that my illness(s) have progressed and I have no family to be a caregiver to me, that desire to be a caregiver has never left. It has combined with a deep love for God's creatures (thanks to my Daddy who loved them, also). We all have different paths to follow in life. Each year brings or takes away another. As long as an animal shows up on my doorstep in need or hungry, I know in my soul it is my calling to care for them. I can honestly say they are more loving and appreciative than people for the kindness.

It is a terrible burden to be on the other side of not being loved and cared for in this life. My thoughts have drifted to my mother a great deal this month since her birthday was the 25th and she died on the 18th. How I wish I could remember one kind word she said to me. How I wish I could remember one good encouraging direction she sent me in. Anything. But my memories involve someone who didn't want another child, who told me repeatedly how much she hated me and wished I had never been born. What I wouldn't give to have one good memory. 

I am a firm believer in the fact  that if a person is loved, truly loved, there is nothing they cannot do. Confidence, drive, direction, etc., are part of their life. It truly is a life of day and night. 

This past week I had a conversation with someone who asked if people sent their children to certain colleges in order for them to meet the right people, to pick the right families, to be in the right circles. I'm sure they do. It never occurred to me until then that my hope for a better future out of the one I had been born into was shaken by that sentiment. It never occurred to me that as hard as I fought to pull myself out of the environment I was raised into would  not matter to someone who was looking for a certain person born into the right kind of family. I worked hard, paid my way through college, and was determined to pull myself up from the poverty from which I was raised. 

As the years have passed I have learned lessons far more valuable that where to send your children or who they should marry (since I never married and had no children). I have learned to be kind and compassionate since these two things are becoming more rare than hen's teeth in our society. I have learned to accept someone for who they are, how they are, and where they are in life. I have learned to care by listening. There are far too many people who talk and waste words simply to be heard and seen. I can count on one hand the number of people who actually listen, care and do something about it. 

In the latter stages of my illness(es), I have felt as though wearing a sign around my neck saying "I may not look sick, but I'm suffering inside" might be so much easier than subjecting myself into a group of people who constantly say hateful, inappropriate and uncaring things. If I am not subjected to these comments, I'm ignored. I don't know which one is worse. I do know both are harmful to body, mind and soul. 

Nowadays if I don't have a doctor's appointment or hospital tests, I'm home alone. I don't see another human being. I don't get phone calls. I am just struggling to make it through. 

Then I simply want to go home. No matter how foul my mother was, home was still a comfort to me. My room, my bed, my boundaries. I just want to walk in, shut the door and go to sleep and feel that "ahhhhhhhhhh" feeling once more in my life. 

It has become terribly hard for me to walk a short distance so being trapped inside has made it worse. I might as well be back in Alabama. My back has worsened. I have shortness of breath due to lung issues, and I simply cannot function like a normal person anymore. The extremely cold temperatures have wreaked havoc on me. I find myself on the sofa or in bed wrapped in a blanket most of the time.  It all started with a disease known as systemic lupus and has spiraled out of control with the addition of many others.

At the beginning of this month, an old college friend died in her sleep. She was 49. Her sister found her the next day. She was lucky. No years of suffering. She wasn't left for days or weeks before someone found her. Most would disagree with me, but if you saw life from this side, you'd understand more. 

Life can be so hard. It is so important to be compassionate and kind to every soul we meet because we do not know what hardship they have been through or what struggle they face. Whether you can make a financial difference in someone's life or simply give them love and listen, make a difference. In a world filled with selfishness, those things are needed more than ever. 

Today make a difference in the life of one of God's creatures - whether human or animal. 

Tuesday, January 27, 2015

Tuesday's Tests

It was a long hard day. Cat scan was at 8:30 am Then I had to blowing a tube for 50 minutes and walk for six. My normally low blood pressure shot up so high I had to be monitored. Then they wheeled me over for a heart echocardiogram where the Tec spent almost an hour pushing into my chest. I have bruises. 

I think God for good friends who take me into appointments. I am also thankful for wheelchairs. 

Today was a rough day. Now waiting for results.

Sunday, January 25, 2015

Remembering My Mother On Her Birthday

Today is my mother's birthday. She would have been 94. She died two days before my 24th birthday. She was 64 yrs. old. 

Remembering her on this day.

Saturday, January 24, 2015

Time For New Hospital Tests

It has been a wonderful birthday "week" topped off with four inches of snow last night. But now I face a new set of hospital tests on Tuesday morning.

Have to be in Lexington at 8:30 a.m. for a cat scan, echo, and walking test. This will determine for sure if I have pulmonary hypertension. I'm still having problems with shortness of breath, not being able to walk for long distances, badly clubbing nails (curving over), etc. so if the test doesn't show this diagnosis, he said there is definitely something wrong with my lungs. If it is PH, I go for a heart cath on the right side and medications will be added to the already mound of meds I take.

And so the journey begins. Tests, diagnosis, treatment. Not something I'm looking forward to for sure.

Photo of my Clubbing Nail:

Winter Wonderland

The forecast was for less than an inch. When I woke up this morning, we had four inches on the ground. So beautiful! When I took a look at the power lines, I was amazed we still had electricity! 

Even though the cold is hurting every inch of my body, the snow smells "clean." So pristine. I took photos from the doorstep before anyone spoiled its beauty.

Thankful to my next door neighbor who came over and shoveled my walk way this morning. He was also so very kind to take my old mattress and box springs to the recycle bin in town yesterday. 

Sharing some Wilmore snow:

Friday, January 23, 2015

Snow and Yellow Roses!

Today I was blessed three times - first with snow on the ground, a brand new mattress set (thanks to Sandy), and then with beautiful yellow roses!! No idea who sent them, but if you read this, THANK YOU! You made my day!!

I think Rascal has the best idea of all. Snoozing.

Wednesday, January 21, 2015

A Great Birthday

It has been a great birthday week. My best friend came up from AL for a week and we did so many fun things together. Stayed at Talbott B & B in Bardstown, KY, visited My old KY home there. Talbott inn is the oldest inn in KY. Since business was slow in January, we ended up being the only people in the building Sunday night. Felt like we had the house to ourselves. Loved it.

Stopped by the Abbey just down the road.

Ate at Saul Good in Lexington last night. They did a chocolate covered popcorn ball for my birthday.

I am so exhausted, but it is a wonderful exhausted. When Sandy left for the airport this afternoon, I went to bed.

If this was my last birthday, it couldn't have been any better.


Wednesday, January 14, 2015

Doctor Results

Yesterday I saw a pulmonologist. He seemed good at what he does so I was kind of impressed. I still hold out opinions on doctors until I know further, but he made a good impression.

I learned more about pulmonary hypertension. If gone untreated, death occurs within three years of onset. There is no cure, but there is medication to slow it down (just like lupus). It can be caused by several things, but lupus was top on the list.

He said he leans more toward a diagnosis of pulmonary hypertension, but wants to do tests. On January 26th I go back for an x-ray, echo, and walking test. First two are easy, but walking has become difficult for me. I have shortness of breath. My chest hurts. So we will see.

He said if the pressures inside my heart show lower levels and if by some slight chance this isn't PH, there is something wrong with my lungs due to the intense clubbing of my nails.

If there is a diagnosis of PH, my next step will be heart cath on right side. They will see how everything is working or not working.

I realize it is just one more thing on the list, but it hasn't sunk in yet. I've had periods of being overwhelmed and then just coping. It would explain the shortness of breath when I try to walk or even when sitting still.

I am anxious.

Tuesday, January 13, 2015

Doctor Day

Another doctor day. New doctor so I'm not sure what to expect. I think I've become jaded by the list of doctors who just don't care. I hope and pray this one does care enough to search for what's going on. At least I have an outward symptom - nail curving.

He will be testing for pulmonary hypertension. Don't know what that involves so this will be a new experience.

It is so cold outside. When I went out to feed the kitties, my hands turned blue. It took half an hour to warm them up. I'm feeling sick today so going out in the cold is not a good thing to do.

Watched "Golden Globes" Sunday night. So happy for Kevin Spacey who won his first Globe after eight nominations.

Hoping those who read this post today have a great day.

Friday, January 9, 2015

Birthday Thoughts and Death Anniversary

This month is my birthday. I was born January 20th, the day John F. Kennedy was sworn into office.

My mother's death anniversary is also this month - January 18th. Her birthday was January 25th. She died at age 64.

My birth was not a joy to her as she told me every day of my life how she never wanted another child. I found out long after her death that the doctor who delivered me offered to adopt me when I was born. My dad wouldn't hear of it.

Sometimes I wish she would have let him. Perhaps I would have been loved and encouraged. Perhaps life would have taken a different turn for me. Perhaps....

I always thought her death is what caused me to hate birthdays. Spending my 24th in a funeral home for her viewing was not a bright ray of sunshine. As time has passed, I realized the lack of love she showed me, wishing I had never been born, never celebrating my birthday even with a small cake, etc., all combined to push me to hate birthdays. It wasn't until I went off to college where friends celebrated with me with parties and cake that I thought birthdays were okay after all.

My birthday occurs in a month that is dark and dreary. It is cold. It is wet and painful. It also occurs after Christmas - a time when giving and remembering is over.

I endure January. It is a mixed basket of pain and sorrow. But I keep reminding myself there is a reason I am still on this earth, many reasons perhaps. But as each year passes, it is much harder to function like a normal person. This horrid disease robs me of so much of life. It is so much easier to fall into a well of self doubt and wonder why I am still here.


A Pajama Week

I have been sick all week. With the below zero temps coming in, barometric pressure going up and down, etc., my body has taken a beating.

It has been a pajama week. I've had to spend more time in bed than out. Doesn't help that my mattress is worn out and I need another one. The unbearable pain has caused insomnia. Oh the joys of dealing with systemic lupus plus its added complications!

How I wish my mattress would change into a brand new firm one overnight!

Thursday, January 8, 2015


I just want to go home.

Tuesday, January 6, 2015

COLD!! and Doctor Updates

Ventured out to the doctor today. Man was it cold!! Even colder tomorrow. Wouldn't be so bad if snow was on the ground. Too cold to snow.

Doc said my white blood cells are high. Another blood test today. Next Tuesday a new doctor. Searching for pulmonary hypertension. A lupus thing. Have to see it as a new learning experience. He said the clubbing of my nails are worse. Not a good sign.

So cold. Time to curl up under the electric throw.

Saturday, January 3, 2015

Amazing How Dreams Catch You Off Guard

I am always amazed at how dreams can catch you off guard.

Having systemic lupus, fibro and countless other illnesses rolled into one, it is always a welcome treat to sleep a full night. Most of the time sleep eludes me, but when it comes, it comes in amazing dreams.

Walking through one setting after another - never makes sense. Even encountered my mother last night at a gathering I was in charge of handling.

But the end of the dream is what always surprises me. Kevin Spacey came to visit. People kept passing word through the crowd Kevin was there. At the end I saw him. Suddenly someone else stepped in between us and he walked out. I chased after him, "Kevin! Kevin!"

He stopped and I ran toward him to hug him. By the time I touched him, I woke up. Happens every time.

For some reason Kevin appears in my dreams, especially when life gets to be overwhelming. He's sat by my bed when I was sick. He's made sure I was looked after. We have laughed and enjoyed many encounters in dreams. But when I turn to hug him, I wake up.

We can't control our dreams or even who we dream about. However, we can welcome those comforting ones in time of struggle.

I am thankful to have hugged Kevin in the past. He's got a good heart. (see photo). But he will never know how much comfort he has brought to me in dreams. Whenever I have a dream he has appeared in, I always say a prayer for him. You can't have too many people praying for you.

Thanks, Kevin Spacey, from the bottom of my heart.


In Case You Missed It - Kevin Spacey

Check out Kevin Spacey playing harmonica and singing:


Friday, January 2, 2015

And So The Year Begins

With the year starting out so sad from the loss of someone I knew, to struggling with a chronic illness that never seems to let up, my year starts over again with doctors. My first doctor visit of the year is Tuesday - general MD. So here we go!

A week from next Tuesday I see a specialist. My rheumatologist thinks my heart has been damaged by lupus. So to rule out possible lung damage, too, I have to see another pulmonologist. A cardiologist noticed the downturn of my fingernails almost three years ago. He said it was a sign of lung damage. Unfortunately, he sent me to a doctor who wasn't interested in determining what was going on unless I had COPD. Since I didn't, he just pushed me out the door.

So she notices my nails are even worse. They are curling under. We will see how far this doctor will go. I'm so tired of being pushed from doctor to doctor, most of whom don't care, don't listen, and do nothing but waste your time. It gets old after awhile.

Then back to the Rheumatologist in February. I am also getting very tired of doctor appointments. I see each one every three months.

At least I get two out of the way before my birthday on Jan. 20th. It is just another day to me, but at least I won't be sitting in a doctor's office.

When I was growing up, I was always told my birthday was too close to Christmas. So I never got gifts and my mother never made a cake. I was the pushed aside kid. Then when my mother died two days before my 24th birthday and I spent that birthday in a funeral home, it scarred me forever. My mind always jumps back to that day.

With the tech age being so popular, people rarely send out birthday cards. Personally I love cards and make sure to send everyone I know a card on their birthday. I would be thankful for cards. What kind of wish would I add? Yellow roses. I love yellow roses.

I've been terribly sick the past month. Throwing up every week has taken its toll. My body is weak. Not being able to clean my apartment has taken a toll on it and me. It is true that surroundings make a huge difference.

This year I hope for strength to clean, to function like a normal person, and to make some good memories. I made ONE New Year's resolution - I will not be bullied and keep quiet. Adults can be bullied, too, and most of the time I just cower when someone bullies me. Never again. I will stand up for myself and not take it anymore.

And so the year begins.

A Long Sad Week

Last night I found out an old college friend of mine died. She was only 49. Her sister found her. No illness known. She passed in her sleep.

Such a hard shock for someone to find their sister dead. Hard horrible thing parents should never have to go through. And it was a shock to hear she passed so young. Vicki was sitting in my living room this past summer when the old group gathered together.

You never know what a day will hold. Vicki just went to sleep and passed.

We think we are in full control of our lives but something like this reminds us just how vulnerable we truly are. Life is a mere breath.

I think Vicki was lucky. She had someone to find her. She didn't lie there for days or weeks until someone discovered she was gone. She also just passed in her sleep. No suffering. What better way to go when time comes.

The Bible says when we are born we are allotted a certain number of days on this earth. We don't know how many days, but God does. That's why we have to make a difference in lives we come in contact with, accomplish what we can while we are here, and forgive.

I'm still stunned. Even though Vicki and I were close in college, we had not been close for many many years. I still think back to those college days and remember when we laughed until we cried. Seems like a million years ago.