Tuesday, April 30, 2013

In Memory of my Daddy

My Daddy died April 30, 1996. He was the last member of my family. I miss him so much. The following are two photos of him:


 

Sunday, April 28, 2013

A Thing of Beauty

"A thing of beauty is a Joy forever." John Keats.

Yesterday I went to Lexington with my friend, Julie. We were stopped at a stop sign due to heavy traffic after taking several different turns. The turns lead us to a most beautiful thing for the day - a mama duck and her babies crossing the road. Julie sat still while the mama took her babies across safely.

Later we had lunch together. Outside the window were birds busily building their nest. They stopped to rest on the bench and looked in at us, their beaks full of nesting stuff.

God sent two blessings yesterday - nature's beauty. Neither of which could have been planned. The mama duck stepped out on faith into that traffic knowing she and her babies would be safe as she crossed the street. The birds building their nest knew the structure they chose would be sturdy and dry. They also knew the people behind the glass wouldn't harm them.

I'm amazed sometimes at how His creation has more faith than I do. They simply live by the instincts He gave to them. We were given a brain to rationalize and a heart to feel. Yet these small creatures have more faith than a person with so much more.

The ducks and birds made my day. They taught me a lesson. Their beauty reminded me how great God is still.

The simple things are far more beautiful than those things with high price tags! They are more beautiful when they teach a simple lesson.

 

The Best Man

Three Different Men:

Politician - runs for office, tells people what they want to hear, sworn in, doesn't keep promises he makes to people, life built on lies. Prideful and arrogant. Doesn't know what it feels like to work for a living. All talk and no do.

Actor- Entertainment world - Struggles to make it big - fame and fortune, reach the top, recognition, obtains "yes" men wherever they go. Forgets what it is like to struggle financially, loses compassion as a human trait. Prideful and arrogant. Feels as if they failed if no one knows their name. Appears at functions to remind others they are still "somebody." Focused too much on themselves.

My Daddy- Minimal education, physically hard working, supported every basic need his family had, never went without a job, endured judgement from others because he was a simple man, loved animals and made sure none that crossed his path went hungry. Loved people. If he knew someone was hungry, he took them food. If they had need of shelter, he made sure they found shelter. His rough outward exterior harbored a compassionate heart. His words followed action. He was content with what he had, never needing to climb a ladder to make himself better than anyone else.

Of the three above, my Daddy was the best man. He out shined the other two by far. He put actions to his words. He loved others and met needs. He worked hard. Provided for his family. He had a contentment others could only wish for in this world. He was a simple man, dressed in blue overalls, a plaid shirt and a red cap. He loved tending his garden, going fishing, and telling stories.

He was not prideful or arrogant. In this world, he was not a "somebody." He did not have "yes" men.

He was by far a better man than the other two.

He died April 30, 1996.


 

Wednesday, April 24, 2013

It's Not That Easy

When you're sick and in constant pain, it's not that easy. You endure. You suffer. You survive. But you're miserable inside.

As much as you hate taking medications, you have to just to endure the pain caused by a horrible disease you didn't ask for in the first place. Eighteen years of pain, damage, struggles with doctors, insurance companies, paying for high priced medications you need just to endure the pain because there is no cure. Only medications to treat the symptoms, the pain, the suffering.

And it's not that easy. Today I called the pharmacy to find out my insurance company would not approve my new pain medication even though I've used it in the past. It was sitting in "limbo" waiting to be filled. Needed "prior authorization" from the doctor they said to proceed. Didn't bother to send a request to the doctor's office. Didn't bother to contact me. Just left it in limbo. So I called the pharmacy. They gave me the 1-800 number to give to the doctor's office.

The doctor's assistant said they usually send a fax stating the med was turned down and they needed to send more info. This pharmacy didn't. Patients aren't required to get involved. But I had to get involved. The assistant called and took care of it. The pharmacy called and said it was approved. The doctor's office called and told me she was transferred to the pharmacy and it was "questionable" but she said it was approved. Two different stories. Odd thing is this isn't a narcotic. It is simply an NSAID, but it works. It releaves the inflammation. Once she called the number and asked for authorization, they only asked if I had used it before. That was it. Since I had, I was approved. Time passed in limbo. I suffered. They just let it hang in mid air and failed to follow through (the pharmacy).

With insurance companies and some pharmacies you are simply a number. Care isn't given to a person who is suffering. If Obama wanted to make a difference in health care, I wish he would have overhauled the cost of insurance and the cost of medications. What a huge difference that would have been! There lies the rub!


Tomorrow I have to call back and find out if it was or was not allowed to go through. It is bad enough this med costs $125 a month. The one med that works - has worked in the past - is causing more stress in my life. I'm thankful for the gift I received so that I could proceed with getting the Flector patch filled early.  Thank you, Liz!

Sandy found a pack of flector patches I had given to her over a year ago. She mailed them to me. Not many left, but I can use them for a day or two. The rain came in last night and the pain has been unbearable. The patches she sent were like gold to me!

This day has not been easy. I'm sticking on the old flector patch and crawling into bed in hopes there's enough medication left to ease the pain caused by the rain, the flare and the people who just didn't care.

Monday, April 22, 2013

Just Want to Scream!!!!!!

Today I just want to SCREAM!!!!! For two weeks in a row I've gone to water aerobics only to sit on the sidelines. The water has been too cold for me to participate. Instead I've had to sit in the TV area and wait for the class to be over since I came with a friend. The Luce Center is too far away for me to walk.

The swim team practices early Monday mornings. They have to practice in a cold pool. I get that. It isn't a hard thing to do to flip a switch and turn on the heat before you leave. But they don't do it. So I can't participate. The cold water sets off a lupus flare and puts me in bed for a week or two. The pain is worse when I come out of a cold pool than before I went into one.

This is a group of mostly older women. You'd think the college would understand how bad cold water is on arthritis and other illnesses. But they don't seem to care. At least their actions show they just don't care.

My life has been affected by too many people who just don't care. I've been emotionally destroyed by people whose verbal abuse, harsh judgement, hateful remarks have all but destroyed my self esteem and self awareness. I've reached a point in my life where it is so hard to trust another person in fear they, too, will "beat" what's left of my soul out of me.

I've wrapped a thick wall around my heart. Unfortunately, the wall still has ears and the ears still hear heartbreaking words. The heartbreaking words bring stress to my body. The stress causes flares. The flares cause irrepairable damage to my body. I have to deal with this damaged body alone.

So I try to protect myself physically from pending pain - whatever may set off a potential flare - and emotionally - whatever may destroy what's left of my heart.

It all comes back to this: we live in a world filled with people who just don't care. I treasure the few I can count on one hand who do.

I attend a Bible study once a week. Since I've been sick with lupus flares several times since January, there have been several I've missed. No phone calls. No emails. No one checks on me. Tomorrow is the last one until September. Since it is the last one, one of the members called tonight. The purpose? To ask for money so that they could buy a gift for the teacher and the one who has offered her home for the study. I don't mind participating. In fact, I wanted to. I just wish my first phone call would have been for another reason.

People are people no matter where you go. My duplex neighbor only knocks on my door when the internet is down. We made a deal when he and his family moved in next door. He can have access to my internet if he takes care of both yards since I cannot physically cut the grass. Personally I think he gets the best part of the deal since winter doesn't give need for grass cutting. But they never speak. When I am outside and they are, too, they go inside. Young seminary students with two children. Never had a cross word. Just not that friendly. I expected better from seminary students.

Still, I am thankful for them. They are far better than any neighbors I had in Alabama.

Looks as if I have to find a new way to exercise. I can't continue to go to water aerobics, strip down to a swimsuit only to change and wait in the tv room. It is way too depressing. I am priviledge to bad "lack of dress" code at Asbury. Last week I sat across from a young man with a backwards ball cap, dirty jeans, torn t-shirt and flip flops. He walked out of class that way. Today I watched a girl walk by with a short short dress. If she had bent over all of her business would not have been a secret. So many guys walked into class with shorts. Just made me sick! This college use to teach kids how to dress respectfully. Now they are educating a bunch of slobs! I wonder what benefactors would say if they happened to show up one day and view the appearance of students.

I attended a play recently. "Music Man." I don't remember that time period having a nose ring. Yet Asbury now allows them.

I was told they couldn't wear shorts on campus until after 4:00. Today I saw a girl sitting in the semi-circle wearing shorts. It was around 1:30.

Just makes me sick and not because we didn't dress that way. It shows a lack of respect for themselves. They looked horrible. What are the Board of Directors thinking?

Yes, I'm ranting today! I'm mad. I need a new form of exercise to vent my aggravation. To release this horrible pain. But I am limited. I can't walk more than a block without my spine freezing in pain. I can't walk in heat anymore than I can walk in cold. They have the same effect.

So maybe I should try doing yoga stretches again. I haven't done those in MANY years. My floor is concrete with a thin carpet covering so I will need a thick thick pad. Another expense! But if I don't protect myself, I can break a bone easily. I've had one in the past. I just can't afford a pad right now. But I can't afford NOT to do some kind of exercise. I'm just afraid to do it on a concrete floor. I cannot take a yoga class. I'm not physically able to do the stretches at the pace of a class. But I can do a class via DVD.

Oh how I wish I could get the prescription filled for the Flector patch! May 3rd where are you? It seems days on the calendar just ticks off slowly. It worked before and I hope it works again. Neurotin was too strong for me. I could not tolerate it. End of story. End of pills. I just want to be rid of pain!

I didn't have exercise today. The pain is horrible. Hoping sleep will release some of it. Pain in my body. Pain in my mind. Pain in my heart.

 

Friday, April 19, 2013

Doctor Day

Woke up to another painful day. Yesterday was 83. This morning it was 44. Tonight's temp - 30's. The rain swept in like a burglar in the dark last night bringing in the most intense pain of the week. The sad part was I had to get up, get dressed and drag myself to the rheumatologist today.

What a hard thing to deal with when you're feeling too sick to go to the doctor. By the time I take a shower and get dressed, I'm exhausted. I made a list yesterday so that I wouldn't forget what I needed to discuss with the doctor. I knew today would be a bad day since the week has been so painful.

This rheumatologist isn't like the one in Dothan. He barely touches me. Barely listens. Comes across as if he's inconvenienced. But I've learned to take control of the time I'm given.

We discussed what meds are working and what meds aren't. Today he added two more medications. MORE EXPENSE! I'll have to wait until May 3rd to add them. One is a prescription pain patch for my spine. It is an anti-inflammatory.  It is designed to release medication directly to the source of the pain. I've used it in the past and it does work. I am hoping it will allow me to walk further without pain. Right now I can walk only a block without being in extreme pain. Holding on for two more weeks before the 3rd gets here!

When I arrived back home today, I crawled back into bed and prayed for pain relief. Sadly it did not come. Walking from room to room has been difficult. Using my hands have been more difficult. How I hate this horrible disease!

 

Wednesday, April 17, 2013

Sick - Continued

I've been in bed for two days now. Just can't shake this lupus flare. The KY weather keeps rocking like a roller coaster. April showers turned to storms last night. Pain turned to a beating. There are no words to how bad the pain feels when it rains.

The temperatures are suppose to drop again. Back we go to the 50's/30's. Up and down. The barometric pressure is beating against my body like an abuser with a sledge hammer.

I just want to sleep, but sleep won't come because the pain is so bad.

Sometimes I wish I knew someone who understood what I was going through. I feel trapped in a world of pain with on lookers passing judgement.

A kind word is free. A hug is free. Why don't people understand this? When your body is destroying you, the only thing left is your mind and spirit.

I'll tuck myself back into bed, fight the fevers, pray for relief knowing this won't last forever. When I cross paths with someone suffering, I won't miss the chance to share a kind word, give a hug, and remind that person someone cares.

Tuesday, April 16, 2013

The Monster is Back!

The Monster is back! It swoops in without warning controlling every movement of my body, or lack thereof, exposing my vulnerable side to the weakest moments of life. I feel weak today, yesterday and the day before. The lupus monster has returned and taken over again.

I could feel its horror sneaking up Saturday night as I watched the Asbury University play, "The Beams are Creaking." As I sat so still concentrating on every word of this serious play, I could feel the pain seeping into my body. Starting with a headache, fever setting in, pain enveloping my body. I knew the flare had started, but ignored it.

Sunday the monster reared its ugly head once again. I was swollen from head to toe. Fevers reached high temps of 102 and breaking into cold sweats. I found some favor in sleep. When I awoke to the monster again, my thoughts were jumbled, breath short, joints painful. I could not function.

Monday I pushed forward and went to water aerobics. Unfortunately, I could not participate. The water was ice cold once again. The college doesn't adjust the water temp to activities as it should and  Monday was no different. Had I stepped into the pool, I would have been in worse condition.

When I arrived home, fevers had set in once more. Someone had looked after me Monday. I was in the throw of a full-fledged lupus flare. Hoping rest would help, I crawled into bed and prayed for relief.

But relief did not come from the monster. I did not sleep last night. The pain was horrendous. I prayed for some sleep, no pain, just to shut my mind down. But my mind hurt. Everything hurt. Nerves, muscles, joints. Fevers.

I could not go to Bible Study. I could not go on a fun trip to Lexington. I could not breathe. I could not rest. The monster just made me suffer.

Finally after all the pain and suffering, I slept two hours. Oh glorious sleep! Two hours helped so much! The pain is still horrendous. The swelling is still great. The monster has come to stay for awhile.

Hope is on the horizon. I have a doctor's appointment on Friday. Hoping and praying the doctor will listen and follow through to help.

Saturday, April 13, 2013

Living With Systemic Lupus

I have been living with systemic lupus for eighteen years now. Some years have been "existing" more than "living." I've been through many doctors, many medical tests, one medication after another to treat the symptoms.

I've spent many days in bed because I could not walk across the floor due to swollen joints, lost the feeling in my legs and feet due to neuropathy and spinal stenosis (aggravated by systemic lupus).

I've made so many trips to the ER that if I had a dollar for each trip, I'd be rich. I've spent many days in the hospital. I've had surgeries to relieve the attacks on my system caused by systemic lupus.

I lost the life I worked so hard to gain. I lost my savings due to the extreme expense of this disease. I lost my "friends" who just couldn't understand why it wouldn't go away like a cold or the flu.

I've watched many people show ignorance and act according to that ignorance. Judgement was easier than finding the facts. People have avoided touching me, sitting next to me, walked around me because they feared "catching" my illness.

Systemic lupus is not contagious. It is more dangerous than lupus in that systemic does damage to organs causing death. The damage is irreparable. There is no cure. There is no certain medication for it. Only medications to treat the symptoms. They lose their effectiveness after time. The side affects are almost worse than the disease.

I've sustained a great deal of damage over the years. Just because you can't see it doesn't mean it isn't there. If I could submit my medical records on here, they would show ten large phone books in size.

I have experienced medical stress, physical stress, emotional stress, and "people" stress for eighteen years. I never expected to live this long. As each year passes, the pain is worse, the damage is more, and taking care of myself becomes harder.

Even with the financial wipe out of my savings, loss of friends, hospital tests, tons of medication, multitude of doctors, the worst part of all of it has been to deal with it alone. I've had to fight for my own rights as a patient, make medical decisions on my own, accept the "death" of each part of my life, my body, my future.

It use to hurt me when people didn't care enough to understand, to reach out to someone suffering and alone, especially people from my church. Now I understand no one can understand this unless they have walked the same road.

It is a lonely, expensive, life threatening disease. It is hard. Most days I hate dealing with this alone. I hate counting pennies, making decisions between medications, utilities, or food. Quite frankly, I get tired of suffering physically.

I've been harassed, criticized, treated like trash because my illness put me in a financial position that could not be helped. People have been cruel. Each attack left a scar so deep I cannot begin to understand why.

I am thankful for the good things that have been sprinkled between the years. Meeting Kevin Spacey in 1999 was a joy. Sitting in Pres. Jimmy Carter's Sunday School Class was a once in a lifetime opportunity.  Going to Savannah with my friend was so much fun. Being able to go to the beach once a year thanks to my friend, Mark, gave me something to look forward to - all blessings.

But for some reason I am still here. The only way to handle this disease is one day at a time. Do what I can, when I can, if I can and hope for a better tomorrow and pray someone will be encouraged.

Thursday, April 11, 2013

And the Rains Came

And the rains came. The air has cooled down. Clean. Fresh. Pollen washed away at least for one day. The soothing sound beat  against the window pane as Rascal ran under the bed hiding from the sound of thunder in the distance.

Release. The humidity and pending rain has held me in pain all day.

Come rain. Let go of me. Let release of this pain flow with your mighty drops.


And so it did. The pain subsided. I can breathe again if only for a short while.

Tuesday, April 9, 2013

Pain!!

Today the pain is horrific! It isn't raining. It isn't because the weather is cold. It is partly due to unexpected stress I experienced yesterday. Today I am experiencing a systemic lupus flare that involves horrific pain from the top of my head through every inch of my body. One small instigator - stress - just pushed the button, but the disease started the flare.

My joints are swollen. My hands are swollen. I cannot sit up for long periods of time. I cannot sleep because of the pain. Is it any wonder that my place isn't spotless and clean? Today I am ashamed to invite anyone passed the door because of the dust, unvacuumed floors, unmopped floors, etc. I just don't have the "working body" to do the simple tasks so many take for granted.

If only I could sleep today. How I wish I could close my eyes, drift off into a dream world where no pain existed, where I could walk all around town and enjoy the beauty of all things blooming! How I wish I could sit in the warm inviting sun and not be a victim of more lupus damage. For those who are not familiar with systemic lupus, sunshine causes flares. Those who suffer from this disease can only sit in shaded areas and worship its beauty from afar.

Since Spring has come, the barometric pressure will soon show its ever changing damage. With rain and storms, endless humidity, comes endless beatings on already damaged bodies. Summer humidity causes damage to already scarred lungs from previous bouts of pleurisy. The heat causes just as much pain and suffering as the cold.

The wind is blowing outside. Warm breezes blow through the wind chimes outside my window. Each one brings a memory of the person who gave me the chimes. So warm and loving. 

I walked outside to retrieve my trash can lid before it flew off like a Frisbee. I stood there for a moment wishing I could feel the grass underneath my feet as I did when I was a child. But there is no feeling in my feet anymore because of neuropathy. I miss the grass.  I miss the sun. I miss being pain free.

Today is a bad day - I am in pain. I wish I could unzip my body and slide right out. But as I have done for the past eighteen years, I will endure it and look forward to the day when the pain subsides, the swelling goes down and I feel some relief.

Those are the rare treasured days.  

Monday, April 8, 2013

Touched My Heart

While reading the endless feed on Facebook tonight, I ran across the following story posted. It is a good reminder to slow down and make a difference in the lives we come across each day.

A sweet lesson on patience.

A NYC Taxi driver wrote:
I arrived at the address and honked the horn. After waiting a few minutes I honked again. Since this was ...
going to be my last ride of my shift I thought about just driving away, but instead I put the car in park and walked up to the door and knocked.. 'Just a minute', answered a frail, elderly voice. I could hear something being dragged across the floor.

After a long pause, the door opened. A small woman in her 90's stood before me. She was wearing a print dress and a pillbox hat with a veil pinned on it, like somebody out of a 1940's movie.

By her side was a small nylon suitcase. The apartment looked as if no one had lived in it for years. All the furniture was covered with sheets.

There were no clocks on the walls, no knickknacks or utensils on the counters. In the corner was a cardboard
box filled with photos and glassware.

'Would you carry my bag out to the car?' she said. I took the suitcase to the cab, then returned to assist the woman.

She took my arm and we walked slowly toward the curb.

She kept thanking me for my kindness. 'It's nothing', I told her.. 'I just try to treat my passengers the way I would want my mother to be treated.'

'Oh, you're such a good boy, she said. When we got in the cab, she gave me an address and then asked, 'Could you drive
through downtown?'

'It's not the shortest way,' I answered quickly..

'Oh, I don't mind,' she said. 'I'm in no hurry. I'm on my way to a hospice.

I looked in the rear-view mirror. Her eyes were glistening. 'I don't have any family left,' she continued in a soft voice..'The doctor says I don't have very long.' I quietly reached over and shut off the meter.

'What route would you like me to take?' I asked.

For the next two hours, we drove through the city. She showed me the building where she had once worked as an elevator operator.

We drove through the neighborhood where she and her husband had lived when they were newlyweds She had me pull up in front of a furniture warehouse that had once been a ballroom where she had gone dancing as a girl.

Sometimes she'd ask me to slow in front of a particular building or corner and would sit staring into the darkness, saying nothing.

As the first hint of sun was creasing the horizon, she suddenly said, 'I'm tired.Let's go now'.
We drove in silence to the address she had given me. It was a low building, like a small convalescent home, with a driveway that passed under a portico.

Two orderlies came out to the cab as soon as we pulled up. They were solicitous and intent, watching her every move.
They must have been expecting her.

I opened the trunk and took the small suitcase to the door. The woman was already seated in a wheelchair.

'How much do I owe you?' She asked, reaching into her purse.

'Nothing,' I said

'You have to make a living,' she answered.

'There are other passengers,' I responded.

Almost without thinking, I bent and gave her a hug.She held onto me tightly.

'You gave an old woman a little moment of joy,' she said. 'Thank you.'

I squeezed her hand, and then walked into the dim morning light.. Behind me, a door shut.It was the sound of the closing of a life..

I didn't pick up any more passengers that shift. I drove aimlessly lost in thought. For the rest of that day,I could hardly talk.What if that woman had gotten an angry driver,or one who was impatient to end his shift? What if I had refused to take the run, or had honked once, then driven away?

On a quick review, I don't think that I have done anything more important in my life.

We're conditioned to think that our lives revolve around great moments.

But great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

Just What I Didn't Need!



Just wonderful! The only thing I look forward to every day is the mail. But today I receive a notice from an insurance claim that was filed on 2/28/13. States the billing agency filed that date for a service that was rendered on 10/18/09. Since my insurance did not cover all of the bill, I now owe $73.62. Had they filed when the services were rendered, while I was still in Alabama, the bill would have been paid in full.
So where am I suppose to come up with $73.62? Had I known earlier, I would not have spent the money on filling all of my medications, paying for past medical bills, and actually buying food.
This company has done this in the past. I have had to come up with the money. Their services were not completely covered and I had to pay or be put on a collection agency. If it isn't one thing, then it is something else!
So today I am highly stressed and angered. Why is it that when you TRY to do everything you can to control your environment to prevent further damage to your health, the health providers damage your health?
At this point all I can do it pray! Please pray with me! I know $73.62 may not seem like much to you, but it might as well be $7, 362.00 to me.

Sunday, April 7, 2013

In A Not So Perfect World

In a perfect world there would be no illness, no loneliness, no arguing, no death. In a perfect world there would be no suffering, no need for doctors, or medications. But this isn't a perfect world.

It is filled with people who have illnesses that last a lifetime (chronic), who live in families who fight all of the time, or worse who have nothing to do with each other. Or people who are alone in the world leaving them to be consumed with loneliness, the kind you couldn't explain if you tried.

My doctor put me on a new medication two weeks ago. It was designed to ease the pain of my spine and legs so that I could walk better. Neuropathy has already taken the feeling in my legs from my knees down to the tips of my toes. It is permanent - second opinion. Now neuropathy is setting in from my knees to the tops of my thighs. First comes the pain while the nerves die. Then the numbness sets in.

It hurts to walk, at least it hurts my back and upper part of my legs. The new medication was just too strong. I felt as though I was in a coma and couldn't shake it off. No one should have to live like that - even when they don't have a life. The bottle itself was held together with all kinds of warning labels. It should have come with alarm bells, too.

So I can take the pills and lose what is left of my mind, ease the pain and stay in a permanent coma stage, or not take the pills and live in pain.

Sometimes I wonder why I am still here. I did what I was suppose to do - took care of my mother when she was sick and dying, took care of my brother when he was sick and dying, took care of my dad when he was sick and dying. Now I am chronically sick and slowly dying. There is no cure. The damage has been done. There are no doctors interested in finding more answers to my health. I am one of the many who are alone in the world - no family. No one to run to in times of need. No one to look after me should I get so sick I cannot continue to take care of myself.

If only this were a perfect world. If only we could wish for someone to care enough to reach out and say, "I'm in it for the long haul. I'll make sure you find the best of the best doctors who will help. I won't let you down." But people always let you down. It is part of their nature. Most don't reach past their own families...their own security wall.

Just think what kind of ideal world this would be if one person took time to care about someone who was alone and lonely and that person passed it along. Instead of fear we would harvest love. What a concept! So many people talk and preach on love, but their actions don't go past the words they speak.

Others use their words to say "I give to charity." That's all well and good, but what about doing something one on one? See someone in need and actually DO something for that person? It only takes a moment to show an act of love.

It will never be a perfect world, but coming from someone who is alone in the world, who struggles with a lifelong illness, who sometimes wonders why she's still here, it would make all the difference in the world for someone to say to me, "I'm in it for the long haul!"

Saturday, April 6, 2013

Must Be Spring

I heard a lawn mower today. Must be Spring. My neighbor was cutting our grass. It hasn't really grown that much, but the weeds had a head start in their blooms. Kind of pretty with their purple colors.

I'm thankful to have someone to cut the grass, but I wish I were physically able to do it myself. I miss the simple things in life: cutting grass, planting a garden, walking in the evening, etc. My life has become so limited since lupus has taken away so much. My activities have turned to indoors. When I can, I write, sew, embroider, knit, crochet. But those activities can be lonely.

I love it now that the weather is warming up. The temperature in my apartment isn't so cold that icicles are hanging off mine and Rascal's noses. It is still a bit cold though. Still warmer outside than inside. Don't know how on earth I survived a cold winter in here, but thankful I did. Thank Heavens for electric blankets.

When you're not feeling well after a lupus flare and confined to indoors, you tend to look forward to one event: the daily mail. Unfortunately, mine contains bills and junk. It is a rare occasion I receive an unexpected card. I love cards. I just don't get them often. In fact, I only received one card in the mail for my birthday. I do have a dear friend of TN who sends me a card now and then. He sent me a snowman card for Easter. Thought it was appropriate since snow had still fallen since Spring had sprung.

Since I love cards, I make sure to send them during important times like birthdays and holidays. Emails are so impersonal. Cards are tangible - something that can hold the love you are sending to the person.

I've stopped looking forward to the mail. Maybe looking forward to a real Spring this year will be a better hope. Flowers are starting to bloom. I saw a bee pass by the door this morning. There is a blue jay who enjoys eating the dry cat food on my front porch. My bird feeder is empty at the end of the day.

Spring brings more hope.

Friday, April 5, 2013

False Promises

The government makes all kinds of promises they don't keep. When the President does this repeatedly, it really goes downhill.

"I promise no one will hurt Seniors or the disabled with this sequester! They are off the table!"

I can't tell you how many times I heard this. Now he's come up with his own budget. Guess who gets the chopping block - Seniors and disabled. I'm not surprised. I never believed anything he's said so far.

He's reducing any kind of cost of living for Social Security. Of course, inflation will continue to go up. Cost of medication, food, utilities, etc. It is just that now the "juggling" act of food, medicine or utilities will no longer be a choice. It will be No food, No medicine and NO utilities.

He will still continue to send money to foreign countries, spend tax dollars on wasted stupid things, increase government workers for stupid programs, but seniors and disabled will just have to do without any increase in funds.

Why not just clean up the program? Reduce the age of eligibility? Take out the ones who are truly NOT disabled? He's opened the eligibility process as wide as the border. No wonder the funds are depleting fast.

If he spent more time in trying to help us instead of campaigning for next year's democratic election, perhaps we wouldn't be hurting so badly. Are you listening? Maybe you should.

I told a friend a few months ago not to preach his good qualities to me unless he (the friend) couldn't pay his rent, utilities, his medication or food. He accused me of being cruel. I thought he was heartless. He has a good job, doesn't have to live on the edge every month and suffer. He has no idea what it is like to suffer. Yet he is quick to condemn me for speaking out for those who have no voice, those who are sick, elderly, some with no family and cannot fight back.

His comments hurt me more than he will know.

Well, President, I guess I'll have to forfeit my $15 raise to combat the cost of living. I'm sure it really hurt the government.

You should truly be ashamed.

http://www.huffingtonpost.com/2013/04/05/obama-social-security-cuts_n_3019123.html?icid=maing-grid7%7Cmain5%7Cdl1%7Csec1_lnk3%26pLid%3D294060



Thursday, April 4, 2013

Doctor's Visit

Because I take a medication for systemic lupus that deposits on the back of my retina and can cause blindness, I have to have a retina exam plus other tests every nine months. I had my exam last month. However, my left eye tested inconclusive. Their diagnosis: you're tired and and we want to make sure that is the problem and not the medication causing toxicity. Come back next month and take the test again.

I dreaded this doctor visit. Last month I was there four hours. Ridiculous! Today my appointment was at 1:00. I took the necessary test and was led back to the waiting room. She informed me my doctor appointment would be at 1:40. First I heard of this. No one told me when I made the appointment. No one told me when I called yesterday to confirm the time. So now I had to wait  and wait and wait.

Problem was I friend brought me to this appointment and she had to be back in Wilmore by 4:00. It was almost 2:00.

Finally they called me back. The tech just did a chart eye exam (same test I did last month) and sent me to the back waiting room. So I waited another thirty minutes.

When the tech called me into the exam room, I waited ten more minutes for the doctor to come in. He never touched me, no examination, nothing. He looked at the test. Said it looked much better than the last one, and recorded a letter to my doctor to continue medication. He was in there for three minutes.

I was there for 2 1/2 hours. My test took fifteen minutes. My doctor took three. Amazing isn't it?

The same exam I had in Dothan only took an hour at the most and that included waiting.

The office here books appointments on top of appointments and you're stuck waiting and waiting. By the time you see a doctor, you're exhausted. When you have an illness like systemic lupus, you're wiped out. You just want to get out of there.

I'm so thankful this is over. Now one more doctor to go this month.

I explained to my friend today that sadly this is my life. I have to go to doctors, different ones, and frequently due to the nature of my illness. They have increased over the last few years due to the progression of the disease.

I won't improve. I will always need medical care. I will have to take medication. It isn't like the flu. You don't get over it after a period of time. It is for a lifetime.

I think she understood. It is so hard to explain to someone who is healthy just how hard it is to be chronically ill.

Easter Flowers

Every year just before Easter and Thanksgiving, my best friend, Sandy, and I would always go to the graveyard to put out flowers. Helped me to "be" with my family since everyone from the Riley side is buried there. So are my dad and brother.

The act itself is healing for me. Just gives me time with them again. I also love that old cemetery on top of the hill in the country. So quiet you can actually hear the wind blowing through the trees. The first time I went to that cemetery was when my mother died. I was terrified of cemeteries before then. After losing so many people by the time I was 35, the fear was buried under the weight of grief.

Now the graveyard is a quiet soothing place. But since I've moved to KY, it is impossible for me to go there now. Sandy is keeping up the tradition of flowers. She put them out before Thanksgiving and again before Easter.

Many friends would never do what Sandy has done for me. I will be eternally grateful for what she has done and continues to do.

Here are the photos:




 

Tuesday, April 2, 2013

New Month New Worries

I'm up late tonight worrying over finances. Fixed income bring fixed worries. New med brings more expenses. Still cold here. More cost for heat.

Someone shared with me today that you shouldn't plant bedding plants in Wilmore until after Derby day. Too many chances for another frost. That's the first weekend of May. That means more cold nights ahead. That means more heat to use. That means more expenses. TWO doctor's appointments this month. More expenses.

So what can I cut this month? Food, medication refills? Both? Probably. I'm a big worrier. Always have been. Stress from worry isn't good. Flares comes from stress. Worry is wasted energy. It also shows a lack of faith.

But I don't have anyone to run to for help in time of need. I have to cut where I can. Some day it would be so wonderful not to worry about whether I could afford to buy food or fill all of my medications that month. Last month was a dream month - One in a million. I didn't have to do either one. I filled all of my medications and I bought food!

Taking a deep breath, one day at a time, knowing God always takes care of each need. Releasing the worry into His hands.

 

Monday, April 1, 2013

Buddy and His Bunny

Most days we just don't have control over our circumstances. Tends to set the tone for the rest of the day. 

Easter Sunday was that day for me. When I walked outside to feed Buddy, I saw the scoundrel down the road with something in his mouth. He was heading home as fast as he could run. When he reached my feet, he dropped a baby bunny. I picked up the poor thing hoping it was still alive and it was. As I scolded the cat and tried to walk toward the door in hopes of putting the bunny inside and tending to it, that baby hopped up and out of my arms onto the cold concrete below. Buddy immediately chased him into the bushes where I could not reach them. I beat the bushes trying to run him out, but no cat. No bunny.

I pushed the bushes back to see where he was. No cat. He had run through the other side before I realized he was gone. I don't know if he caught the poor little thing, but I felt so awful that the bunny was Buddy's dinner. I was so close to rescuing it. I failed.

It was that moment my next door neighbor walked up and introduced me to his son. He informed me if I touched the bunny, the mother would have nothing to do with it. I thought to myself, "I would have raised the bunny myself if I could have saved it."

The whole event reminded me how much we really don't have control over what hits us out of left field. Life happens. So does death. I remember my family and miss them terribly on holidays. The loss is intensified no matter how many years have passed. And if your life never has family to replace the loss, it is empty, lonely, hard to function with other families at times.

Although I was very thankful to share Easter dinner with a family yesterday, I was still reminded how much I stuck out like sore thumb. I listened to stories I could not relate to about people I did not know. I think it would have been much easier if someone would have taken the time to talk to me, ask me questions, to try to get to know me. I felt awkward.

The friend who invited me has been friends with the family for years. She is family to them. They invited another family. They had something in common. I admit there were times I almost excused myself to leave after the meal. But I didn't want to insult anyone. The best part of the day came in hugs. Their sweet little girl was so open and loving. That's the thing about children. They love you no matter what. Jesus said, "Come unto me as little children." He never meant to make anything complication. He wants everyone to understand His message of love.

My friend and I stopped by the college to visit a friend who was working Sunday. She works the switchboard. We three meet on Sunday for a small Bible study and give each other support to make it through the week. That time means more to me than anything I can ever express.

By the end of the day, I was emotionally spent. I had decided to climb into bed early. With the rain coming in late, I could feel the pain setting in my joints. But all I could see was that poor little bunny. I realized I had unintentionally run the cat off while trying to retrieve the bunny and had not seen Buddy since.

So I sat up waiting for the cat to come home. You'd think I was a mama waiting for her child at the end of a day. But I couldn't close my eyes until I fed the cat, made peace with him, and let him know I was sorry for running him off. He showed up around 9:30 p.m.
I followed afterwards.