Wednesday, July 29, 2015

Yucky!!

Weather can be such a horrible punishment for someone who is chronically ill. The humidity is high. The rain is present. The heat is miserable.

I am swollen. I am sick physically. I don't have a choice but to keep trying.

On days like this I miss my family terribly. Lost my mom when I was 24. Lost my only brother when I was 33. Lost my dad when I was 35. Was alone in the world from then on.

My dad became a tender hearted caregiver after my brother died and when I was diagnosed with systemic lupus. If I were home sick in bed, he would check on me constantly and made sure I had food. Not something my mother ever did when I was growing up.

Now there is no one to help when I can't get out of bed. As much as I love Rascal and Bitty, they are useless when I'm sick!

Our society has become an uncaring place. There was a time when neighbors checked on neighbors especially when they knew the person was sick. Not my experience. Wish they cared more.

I haven't seen another person since last Thursday. Not by my choice. I'm imprisoned inside my place during the most extreme temperatures. No sun exposure. Heat and humidity beating me up regardless.

What use to be something I look forward to has changed to "junk mail again!" It is bad enough to have an email account with no personal notes, just junk mail. Whatever happened to sending someone a card or a written note?? Has that art been lost forever? I make it a point to send a real birthday card when I know of someone's birthday.

As I sit here propped up on pillows with a laptop in my lap, I am miserable. Totally miserable!

Oh to experience hope once again!

Saturday, July 25, 2015

Happy Birthday!

Happy Birthday to Kevin Spacey. I'll always remember the kindness you shared with me.


Wednesday, July 22, 2015

Broken Heart

When I was first diagnosed with systemic lupus I lost a lot of friends. Seems no one wants to be put in any position to help someone who is sick. Before you pass judgement on what I just said, walk in my shoes for a week and then I'll listen.

You'd think I'd get use to losing friends from illness. But I don't. This weekend was no different.

A group of college friends, whom I was very close to in college, gathered in KY this past weekend. Even though I'd probably not see any of them, I had hope. No phone calls, no emails, no nothing. They gathered, did their thing and went back home. I sat alone at home still hoping.

It broke my heart when I finally realized the same people whom I loved dearly, who I thought would be in my life until the end, decided I wasn't worth the effort or time. Apparently I would "slow them down."

I've always said don't show up when I die if you can't show up while I'm alive. My mother said the same thing. I thought she was so wrong. People did care. But she refused to believe.

Turns out she was right. If you ever want to run off a bunch of friends, tell them you are sick, your life has changed, you don't have any family, and you will live with this chronic illness for the rest of your life. Those statements will clean house for you.

Some people say they care, but actions don't back it up. I'm a firm believer in actions speak louder than words. Don't promise someone something and not back it up. Don't turn away because you don't understand. Just care and let your actions back up how you feel.

It will mean the world to someone suffering in silence.

A Sore Recovery!

As I stepped out of the shower on Saturday, I fell hitting myself in the head and falling onto the toilet. Broke the arms that hold the seat on. Bruises galore. Just loss my balance and my knees buckled.

It is hard to maneuver when you have permanent nerve damage in both feet and legs due to systemic lupus. Do you know how it feels when your feet "go to sleep"? That's how my legs feel from the knees down all of the time. Imagine having to stand sturdy or walk across a room on legs like those!

So at times I lose my balance and hit the floor. I learned how to change a toilet seat from this experience. There was no one else around to do it.

Another thing about dealing with chronic illness(es) is having to do it all by yourself. No one to do little things for you. No one to call for help when you can't get up from a fall. Instead you just keep on trying to get up even if it takes an hour.

It has been difficult to pull myself up from a lying down position.

If I ever gave up, I'd die on the floor. I guess I won't give up today.

Friday, July 17, 2015

Just A Reminder

You never know what tomorrow holds so visit that friend today. If you can't visit, send them flowers or a card. 




Good Grief What a Fall!!

When I stepped out of the shower this morning, I fell, hit the toilet seat and broke the back off. Thankfully the seat is still usable. I'm more concerned with the soreness and bruising from the fall. It took awhile for me to stand up again, but I finally did. The good thing is I didn't mind the cold bathroom floor this time around. In Winter it is brutal!

I haven't been out of the house since last Friday. Haven't seen another person since then either. This is my life. I've learned to become content alone. 

Many people ask what I do with myself all day since I can no longer work. If they had a chronic illness, they wouldn't have to answer this question. They would know it takes every ounce of strength just to accomplish the smallest task. Just putting on clothes is a chore sometimes. Most days I don't bother. I save the strength for things that must be done like showering, making dinner, or cleaning when I can. 

During times of extreme weather, whether summer heat or winter snow/cold, I'm stuck in bed. Weather changes are bad on people with systemic lupus. We're a walking barometer. Every rise in temperature, barometric pressure, humidity level, cold temperatures, etc. cause a great deal of swelling and pain. 

Needless to say, I'll be spending a few days in bed after this morning's fall. It feels as though I've been run over by a truck. Didn't take long to stiffen up. The hard part is trying to get up after a fall. The pain is worse. And there is no one here to help me. No one to care for me. No one. 

How I miss my family at times like this. My mother wasn't much for being a compassionate caregiver. She just pushed me to go on. My dad wasn't either when I was growing up. I guess that's why I'm so shocked on the rare occasion when someone does a kindness towards me. I never had kindness or compassion growing up. My dad was better at checking in on me when I was older. He became more compassionate. 

Seems like a lifetime ago I was a full time caregiver for my mom, dad and brother while working a full time job. The memories are still vivid, but if I reach back to remember, my heart breaks. Their losses feel like yesterday. No matter what anyone says, you never get over the loss. You just learn to live with it as time goes on. 

Better head back to bed before I become so much stiffer I can't get out of this chair. 

If you can walk, be thankful. If you can do small things. Be even more thankful. Life changes on a dime!


Wednesday, July 15, 2015

What A Horrible Day!!

Normally I am thankful just to open my eyes in the morning. But today I awoke with so much pain! All I wanted to do was unzip my body and crawl out! There has been so much rain the past two weeks. So many people lost their homes due to flooding. 

Thankfully I live in a place that does not flood when it rains. 

With the rain setting in, the temps going up and down, and stress from day to day living, I've developed yet another lupus flare. Nothing anyone can do about it. No cure. No treatment available. Just treating the symptoms. The only active treatment I can apply is bed rest. 

I spent a great deal of winter in bed due to flares and attacks on my lungs. Now the summer brings the same fate. Just comes with the territory. 

How I wish I could travel! Just run away somewhere and drop off the face of the earth. Wouldn't change my health situation, but it would help mentally. 

When you're chained to home during extreme seasons, it gets very lonely. I haven't seen another person since last Friday. Some days it is a blessing. I think I'd make a great hermit! Other days it just adds to the stress of being chronically ill. 

At home in Dothan it is in the heat indexes of 112. Truth is here or there the temperatures would have the same effect. The difference is I'd not be alone all of the time. 

I saw a post on facebook today that said, "If I had one sunflower, I'd be happy!" 

Personally love sunflowers, but was unable to plant any this year. Too, I'd be happy with yellow roses - my favorite! 

May I ask a favor? If you are reading this post, please do this one thing for me. In every neighborhood there is at least one person who is alone and sick. They may never see another person. They have no family. Make it a point to visit them, take them some flowers or food, and realize that one day it may be you. Invest in someone who is hurting (pain or depression). Make a difference in a life today. 

It is back to bed for me. My thankful moment today is being able to take a shower. Things I use to take for granted, I cherish. How about you?

Tuesday, July 14, 2015

Respect

Today I signed on facebook to yet another negative comment about the Confederate flag. Quite frankly I want to tell everyone to get over it and shut up!


Just for the record, I did an ancestry research project several years ago. Not one of my Alabama ancestors had or were involved with slavery. The fought to protect their small piece of land and their family. The flag represents these men who suffered and died as well. Of course you don't hear that side. I am ashamed of this country for blaming a flag for the evil of one who destroyed so may lives in SC. Did it rid the state's of evil? No. Ask the families of those whose members are shot and killed in Chicago but nothing is said. My parents, their parent and siblings all suffered as tenant farmers. My parents picked cotton until their fingers bled and their backs were destroyed. They never complained. As for the war between the state's goes, the hateful talk degrades those families whose ancestry comes from the south. Remember those of us have feelings as well. Also remember the North also used slavery to their advantage. Do we destroy the American flag as well as their ancestors? I am a southerner  and am just as offended to be told my great great grandfather Emanuel Riley, who died and left a widow and several small children , who fought to protect his small home and land he worked to provide for that family is now among those whose lives are degraded. Think of our families before you spout off hatred.

So why aren't people angry at the constant murders in Chicago where blacks are killing each other? Why aren't people angry at the death of the young woman in California killed by an illegal immigrant? A flag did not "cause" their deaths, yet you rarely hear a word about these murders. 

Most of the people spouting off about this topic are merely showing ignorance. They are repeating what someone else said instead of finding the truth. A flag did not cause the deaths in SC. It does not represent evil. It represents the lives lost in my heritage. 

I'm offended, but it doesn't matter. The only thing that seems to matter comes from people spouting off remarks to stir up trouble. Their basis is empty. 

Words are a dangerous tool. Think before you speak. 



Monday, July 13, 2015

For Those Who Are Taking Benlysta

Twenty years ago my rheumatologist diagnosed me with systemic lupus. It came after the traumatic illness (cancer) and death of my only brother. I was caring for him, my dad, and working full time. 

The one bit of information he shared with me was systemic lupus is an extremely expensive illness. He was right. It has been a struggle each month deciding which, if any or all, of the fifteen medications I can refill or buying food. 

This time last year I started Benlysta treatments. I'd go in once a month for a Benlysta infusion in hopes it would slow down the systemic lupus devouring my body. It was so very expensive. My insurance wouldn't cover all of the cost. I'm still making payments on the medication that didn't work for me. 

Instead of feeling better, I was sick two weeks out of the month from side effects. Yet this is the only medication specifically made to treat systemic lupus. In other words, I was twice as sick from taking the medication. Some people do quite well with it. I didn't. 

If you are taking Benlysta, please know you are not alone in the expense department. Be sure to read this article:

http://www.washingtonpost.com/blogs/wonkblog/wp/2015/06/30/how-new-drugs-helping-millions-of-americans-live-longer-are-also-making-them-go-broke/



Sunday, July 12, 2015

Joy in Unexpected Places

Today I awoke to find several requests on Facebook. They all came from former students of mine. I cannot begin to tell you how much joy that brought to my life! They were my first Senior Class. I was only twelve years older than them. And the truth is they taught me so much about life.

Recently I have struggled with sad thoughts. I wished I had never been born. I felt like a waste of space. I wonder why God put me on this earth. It is hard to deal with chronic illness, treatments, loss of health, and do it all alone. Sometimes it seeps into your mind and soul wreaking havoc.

Then God sent me a reminder that my life did make a difference when I was a teacher. Thank you, Lord, for joyful reminders and love in unexpected places.

The school closed its door this summer due to financial problems. A school is made of people and memories. I hope they hold to those thoughts.

They were the class of 1991. They have all grown up now with families of their own. I just hope somehow my life touched them in a good and positive way.




About Systemic Lupus

For those who do not know what systemic lupus is, here is a link:

http://www.systemiclupus.com/category/systemic-lupus/


There is no cure. Life expectancy depends on the flares and damage from them. Living with this horrible disease is hard.

I've passed the twenty year mark now. My doctor said I would live ten years. God had other ideas. I've learned one great and important lesson from this disease:

You're not going anywhere until it comes your time. So why worry? Take one day at a time and enjoy God's great love. It comes in many forms.

When you're sick people treat you differently. Whether they want to or not, their reactions come in all shapes and sizes. I've had Christians tell me I didn't have enough faith or God would heal me. Wrong! But at the time the negative comments were and are made, I can do nothing but stand in shock at such things. Looking back I have found people who feel sorry for you, People who don't want to be around you (Some think it is contagious - wrong again!). People blame you for causing the illness (yet again, wrong!)

What most people don't stop and think clearly about is they, too, will face some sort of illness in their lifetime. If God healed everyone, no one would die.

I can no longer feel anything from my knees down. When I walk, I walk with a cane. Damage has been done to the nerves in my limbs, lungs, eyes, and brain. I carry an aortic thoracic aneurysm on the lower part of my chest just below my heart. Doctors won't do surgery because of the lupus. It is continually growing to the point where it will tear and death is imminent. A ticking time bomb in my chest. It took awhile to accept the loss of my health, but I refuse to give up.

When I leave this earth I pray God has used this broken vessel for the good of someone else. Every life touches another whether we want it to or not. I hope mine brings goodness and compassion.

Keep going. When you open your eyes in the morning, remember God isn't finished with you yet.


Saturday, July 11, 2015

Weather Beaten!

Literally!! I feel weather-beaten. It has rained so much the past couple of weeks that I've had a hard time functioning with the small things in life. Bending over to pick up something from the floor, standing in the shower, changing clothes, washing dishes, etc. All the things normal people take for granted have been extra hard for me to do lately.

Last night I was sitting up in bed watching my feet swell. Joints included. Oh the joy of suffering with a chronic painful disease as lupus!

Would appreciate prayers during this hard time. I can't seem to get very far.

Thursday, July 9, 2015

Kindness

To the kind soul who sent me a box of food, thank you from the bottom of my heart!! What a wonderful very needed surprise. I want to say thank you personally, but there was no card in the box. This month's decisions came down to refilling my medications or buying food. 

Saturday, July 4, 2015

Nightmares and Dreams

Lately I've had nothing but nightmares. No slasher dreams, just unrequited nightmares.

I woke up at 3:30 a.m. this morning and couldn't go back to sleep. So I fed the cats and watched a little tv. After an hour or two, I finally fell back to sleep. Seems to be my pattern these days.

I dreamed about walking in a group of people I didn't know. There were strangers every where. As I made it down this bridge and through several rooms I didn't recognize, I found a woman with a kitten inside a blown up balloon. I rescued the poor thing and freed it from its prison. The people around me were furious and started to chase me. So I ran (something I can no longer do). I ran into the street of an unfamiliar town.

I saw a road that detoured to the left and somehow knew I was suppose to take it to get home. When I turned the corner, I saw it was an old mining camp so I grabbed an old faded dress from someone's clothesline and covered myself so that I could run down and then up the hill safely. People were chasing me then as well.

When I exited the mine road, I found myself in front of the old bank in my hometown. I knew I wasn't far from home (the home where I grew up), but it was too far for me to walk. So I asked for a ride from someone in the crowd.

They kept asking me who I was and I told them my name, my family's name. I told them I went through school in that town. Everyone said I wasn't the person I pretended to be.

I finally was faced with a woman officer who asked the same questions. I gave her all of the information I could think of on myself. Yet everyone surrounded me and told the officer that I wasn't who I said I was.

I begged her to take me to see the police chief because he would recognize me after knowing my family for years. The officer took me to the court house and continued questioning to find out who I was. I told them to look up Asbury's information online. They called the school number to ask about me. And even though the college confirmed my identity, the officers did not believe me.

I begged for a phone so that I could call my daddy to come and get me. They never gave me one. I remembered a cell phone in my purse. I dialed it and someone answered. It sounded like my Daddy, but his voice was so soft and distant that I could barely understand him. I told him where I was and begged him to come and get me. He said he would and hung up.

As I hung up the phone, I remembered my Daddy, along with my mother and brother, had all passed away years ago. Home was no longer home. And it broke my heart.

I woke up sobbing.

Some days I just want to go home again. I know there isn't a home to go home to anymore, but it doesn't stop the longing in my heart. Dreams (or nightmares) such as this remind me how much alone in the world I am.

So stress has set in and a fever did, too. My joints are swelling and the pain is bad. Stress = lupus flare. This horrible disease has done so much damage to my body over the years that I wish it would hurry up and finish me off. I'm so tired, so tired of suffering.

Do Doctors Really Care?!

My doctor told me to go outside and enjoy the summer. When I reminded him I had systemic lupus and could not, he replied "Then go out on cloudy days." Sometimes I wonder who has more experience - or sense - him or me.

http://www.lupus.org/…/en…/uv-exposure-what-you-need-to-know