Thursday, December 30, 2010

To Start the New Year

I will only say this once. If you come here to read my blog, know it may be filled with sadness or pain. Don't send me emails unless they are encouraging. It is so much easier to pass judgement on someone's life just by wading through words than it is to see it first hand. These words could never fully show what goes on here.

This blog is my way of dealing with a limited life. If you don't like the content, don't read it.

Wednesday, December 22, 2010

And the loneliness settles in...

Today was so quiet that the loneliness was magnified. So close to Christmas, I can literally hear the sadness radiating in my ears. I miss my mom, dad and brother so much. I miss my grandmother. So many others have gone on...aunts, uncles...all gone. If I didn't have Rascal, I wouldn't have a reason to get up. He is all I have in the world and I love him dearly.

Why does this time of year have to be so extremely lonely? I tried to rest more today, but it didn't work. My mind wouldn't shut off. I'm so exhausted from a lupus flare that doesn't want to heal. Just praying for a miracle this Christmas. Just wishing I could walk outside and enjoy fresh air without being afraid of attack. Please, Lord, help me.

The temps are running extremes from 70's to 30's and the barametric pressure is causing so much pain. I just want to sleep through this time of year so that my heart wouldn't hurt so badly. But I can't sleep. I'm in so much pain both physically and emotionally.

Thursday, December 16, 2010

Holidays

I officially HATE this season. People are rude, but that's normal here. It is the hardest time of the year for me anyway, but living here just makes it worse. Words just can't describe it this time. This pain is too deep.

I went grocery shopping last night. Watched a couple with a buggy full of toys check out. Wondered if they would teach the same child who would be recipient of those toys what Christmas really is...the birth of the most wonderful gift of all, the gift of a son who would change lives through eternity. Keep reminding myself that is what Christmas is about, but it is hard not to get wrapped up in families, presents, etc. even though I don't have any family. No wonder depression and suicide is so high this time of year.

I've been blessed with another horrible lupus flare. Extreme pain from head to toe, fevers of 102, can't walk well, have been bed bound all day. Nothing, no medicine, has helped to relieve any pain. Being alone makes it worse. I realize no one will ever understand how bad this is unless they, too, are alone. I swapped to the sofa for awhile, but realized it took me fifteen minutes to pull myself up off of it because it is so worn out. Wishing I had a recliner. Would be so much easier on my joints and spine (spinal stenosis). Not this year or next. Cost of living going up, but Social Security not. Meds going up. Food going up. Electricity going up (AGAIN).

I use to make Christmas wishes when my family was alive. Today I found myself wondering why bother. The one wish I would have would be to have one need met...a safe place to live, one where I could walk outside and enjoy fresh air without being put in harm's way. I haven't been able to do that in a long time. I'm trapped in a four wall prison and can't afford to get out of it.

Yes, I officially hate this season. Today I just have to remind myself Christmas is Jesus' birthday, not what the world has created.

Prayer for Animals

Prayer of Saint Francis for Animals

God Our Heavenly Father,
You created the world
to serve humanity's needs
and to lead them to You.
By our own fault
we have lost the beautiful relationship
which we once had with all your creation.
Help us to see
that by restoring our relationship with You
we will also restore it
with all Your creation.
Give us the grace
to see all animals as gifts from You
and to treat them with respect
for they are Your creation.

We pray for all animals
who are suffering as a result of our neglect.
May the order You originally established
be once again restored to the whole world
through the intercession of the Glorious Virgin Mary,
the prayers of Saint Francis
and the merits of Your Son,
Our Lord Jesus Christ
Who lives and reigns with You
now and forever. Amen.

St. Francis of Assisi

Tuesday, December 14, 2010

A Homegoing Celebration

A little over a week ago, a dear friend's wife of 50 years went to sleep and walked into Heaven. They had a Celebration of her life. It was the most beautiful service I've ever attended. There was music she would have loved performed by her sons and a couple of people from the group "The Dill Pickers" from Birmingham. Sharing memories. Special hymns, one I was introduced to and now love, "Hymn of Promise." I could just see Carolyn clapping her hands and singing along. Even though a drive that far in such a short time span (went up Sat. morning and came back Sun. night) was hard on me, it was so worth it just to be a part of her Homegoing and to be there for Mark.

We wandered around Franklin, TN on Sunday because we stayed in a hotel there overnight. I LOVE Franklin. It is a beautiful place. The downtown is what I picture a downtown area should be. The people are friendly. Snow was falling (A BIG plus for me!) How I miss snow. I asked God for snow before we left, but there was none when we arrived. On Sunday morning when my friend, Sandy, and I were loading the car, it was snowing! Didn't stick but the snow showers were heavy. I stood at the car and just wept. I felt God's presence so strong at that moment. It was His way of reminding me HE was in charge and when He closes a door...leave it alone. He has something much better. I felt His kiss in that snow.

I miss my mom, dad, and brother so much. It is very hard to be alone in the world during Christmas. I lost my family by the time I was 35. Now I'm 49 and believe me, you don't get over it. You just learn to live with it. Just seems the loss is magnified this time of year. Since I spent my life taking care of them, I never had the opportunity to marry and have a family of my own. For some reason, God didn't open that door and it is okay. So many people rarely meet a five year anniversary these days unlike Mark and Carolyn's 50 years.

I watched a movie on TV Sunday night. "The Perfect Gift." It was just what I needed to remind me Jesus is still here. He truly was the perfect gift. The song "Emmanuel (you are with me) touched me more than any song in years. I'm still having trouble just finding that recording. I'd wear it out listening to it. What we go through in life shared with the world will touch another. God uses it to fill a need to heal a hurt. This song did just that for me. Thank you, Mark Smeby.

Saturday, December 11, 2010

Brrrrr!

I LOVE cold weather, but it doesn't love me. Two days ago it actually snowed in Dothan....in December. Never recalled that before. Only snow flakes/showers, but it was snow all the same. On Sunday, Sandy and I were in TN at a friend's Life Celebration. She went to sleep and walked into Heaven. Snow was falling heavily there, but none stuck. When I stepped outside and discovered that gift, I just stood there in tears knowing it WAS a gift from God. I felt a kiss from Heaven. A reminder He was in charge and I worried way too much.

So many doors have slammed shut this year. It has been a bad one. I almost feel like I'm standing in a corner just waiting for help to come. The kiss of snow just gave me a little more hope.

If we go to people for help, we'll be let down time and again. I've known this all my life. When I look beyond, He always sends help. I'm looking beyond and praying for that help this Christmas. I don't need things, just someone to care enough to help me.

It has warmed up to the 60's outside today, but another cold front is coming overnight. I'm shivering. Can't afford to turn on the heat. The government has decided NOT to raise Social Security again for two years in a row, and they have decided to cut medicare coverage. Instead of doctor bill increases for me, that means I won't be going as much, less tests I need, and who knows what else. Our town informed us that in February they would raise the cost of electricity AGAIN. I think that makes three times in the past few months now. No mercy. Food has almost doubled in cost. I can't remember the last time I bought clothes or even a pair of shoes.

So it is wrap myself in a blanket because the heat won't be on in this place. Poor Rascal has started sneezing. So have I. December is a hard month for me anyway. With the economy being so bad I just wonder if the Spirit of the season will be able to step beyond spending, going to family gatherings, parties, etc., and remembering those who are alone. It breaks my heart because I know first hand how hard it is. So many take family for granted. Just think about the senior adults who have no one and no one to check on them. Magnified at Christmas.

Sometimes I ask God why my life had to take this turn. But I've learned what it is like on the other side illness. The world isn't a kind place. Maybe one day I could be the voice for those who are alone, sick and left behind.

Friday, December 3, 2010

Christmas

What do I want for Christmas? needs met

Most important need: A safe place to live.

Tuesday, November 30, 2010

Pulling Off the Band Aid

I made the mistake of watching a Christmas movie late last night. I normally don't watch them because it is the hardest time of the year for me, my family gone, been alone so long. The movie was "A Christmas Visitor", about a family who lost their son during the Gulf War on Christmas Eve. There was a specific scene in there where the father meets the bus with his son to send him on his way. His son was trying to make him understand it was his choice to go. After the son boarded the bus, the father turned toward the camera with tears in his eyes.

That brought back a deep memory of my first day leaving home for college. I had worked so hard to find the money, scholarships, etc. to continue my education and to go away to school, to start my junior year in KY. It was 700 miles away from home and I was going by Greyhound bus. My parents fought for years. I joined in my high school years just to survive. He was an alcoholic and a mean man during those years. I was fighting to get away from him and my mother, the mother who spent my entire life telling me she didn't want me. She never wanted another child, I was stupid, I was ugly, I would never be anything. I was more determined than ever to get as far away from them as I could go. That Greyhound bus never looked so good.

I had never heard of Asbury College, but God opened the door through several unusual doors that lead me straight to theirs. So in January of 1981, I was on my way. He never said a word to me when I boarded that bus. I just said I'd call when I arrived to let them know I was safe.

The next day I called to tell them I was fine. He answered the phone. On the other end was a man crying. I almost thought I dialed the wrong number. He finally passed the phone to my mother. I was angry that he was crying and asked what she had done. She said she didn't do anything. That he was upset that I left. I never gave it another thought until last night. That movie ripped the only band aid off the hidden wound that had not healed all those years ago and the tears flowed and flowed. Even though that was the most painful yet exciting time of my life, it was the worst of his. I never realized how much he did care.

It wasn't till the time after my mother died and years later when he was so sick and I took care of him that I saw a much kinder man. He had given up alcohol. The worse part for me was he never remembered the words or actions of his drinking days so he couldn't tell me he was sorry. That has been left as an open sore for me to deal with for my lifetime.

He has been gone 14 years now, but those actions, those scars, all memories still come flooding back. I wish people would realize their actions do affect their children, total strangers, dear friends and family no matter what they do. Whether good or bad, they affect others.

Thursday, November 25, 2010

Please remember...

Never make a promise you don't intend to keep. It DOES make a difference.

Sunday, November 21, 2010

Thankful

Blogging has helped me cope with the pain, both physically and emotionally, of dealing with this horrible disease and its multitude of spawning illnesses. Some days are worse than others. I'm thankful to be able to write about it.

When I think about so many people in this world suffering so much, I realize I am just a dot on the map. I may be alone and suffering, but I am one in millions wanting my life back, to be able to work again, to have a purpose.

There comes a time to accept life where I am and hope and pray somehow my life will make a difference. I am thankful to have a roof over my head, a bed to sleep in, food in my pantry, a place for my kitty to feel safe. I still long to live in a place where I can sleep through the night and feel safe as well, a place outside of Dothan. Only with help can this come to pass.

I am thankful I was able to take care of my mom, dad and only brother before they passed on. How many people can say that? I worked at the same time with my dad and brother. It was the hardest thing I ever did, but I wouldn't change it. I am who I am today because of where I came from...

May God use my life where I am, be blessed by it no matter how small it may be, and have mercy on me when I step out of line.

Saturday, November 20, 2010

Learning More Every Day

I've always felt my experiences were different. Maybe it is because someone is telling me I'm over reacting or not seeing things clearly. This past week, my personal experiences from being sick and disabled were confirmed as true by someone who sees this on a day to day basis in the world of senior adults.

She shared how their organization to help Seniors had a rough start. Even those in the House and Senate had the same way of thinking as everyone else in the world. As far as seniors and disabled people go, the majority of the population believes their family and church should be responsible to see to their needs, check on them, reach out to help them, visit them, love them. She shared how she told this House Rep how untrue his thinking really was and invited him to visit some of her cases. When the day was over, his entire attitude had changed.

He saw that even though someone may have a family member or two, they don't visit or even call. Churches have no use for members who are not able to attend or cannot afford to tithe. They simply stop the contact. And those who have no family at all simply live day by day in an existence so lonely that it is hard to face the next one.

I never knew God's word taught us to only reach out to those within a church building or to members who give the most money or have family names rooted in history of their town or city. They are referred as "Somebodies."
Jesus never taught us to turn our backs on those who are alone, sick, penniless. So much of our society does just that. The government leads the way. No wonder people tend to walk away from churches or turn the other way when they watch the walk of a Christian whose life does not match the teaching of the Bible. It is quite sad to say most sermons are 90% stories and jokes these days, not teaching from the Bible. No wonder people act the way they do.

Churches build walls around themselves. They raise money to entertain themselves, go on trips, have "teas", and keep out those they think do not belong in their fellowship. Church has become an exclusive club. I wonder if Jesus would be accepted as a member.

When my friend shared her story the other day, a weight lifted off my shoulders. All I experienced over the past few years from church people, those who bully in order to "control" a person trapped in a sick or elderly body, think of you once a year when they call and say, "Someone on our list cancelled. Can we come over and sing Christmas carols to you?" How do you tell them how very insulted you are?! Why would you call me for something like this when I've suffered all year long, when no one visits me in the hospital or call when I return home, when I'm in the ER and I see the pastor walk past my room to visit someone else? Where were you when I was screaming for help to get out of this living situation I'm in...the one where I'm being bullied and have nowhere to go and no money to move? What about the lady who called and left a message about being a part of her group the church formed, some group study? She encouraged and said she would call back. Of course, she never did. My needs are overwhelming and you want to sing Christmas carols? I declined.

This is no longer the story of the "Good Samaritan." You don't have to be lying on the ground wounded and in need of help. Look around you. There is someone not two doors down from you in need of love, understanding and most likely something more substantial.

I believe if you have been blessed with abundance, you should give abundantly, not to a church office so they can throw it away foolishly, but to someone you know is in dire need. If you open your eyes you will see so many people screaming inside, screaming for help. Will you listen?

I've been screaming since May...I pray by December I'll be able to say I have a new home to move into, a place quiet and safe, away from town, a place that does not have someone bulling me because they can. It would take a miracle, but I believe in miracles.

My heart breaks at so many screaming for help, those who promised to help them, and then letting deaf ears fall upon their cries. We all answer for our own actions, or lack thereof, one day. God have mercy on me if I ever turn away from anyone who is in need.

Tuesday, November 16, 2010

Lupus Sores

Joy of joys! Two days ago I woke up with sores in my mouth. Lupus sores! The pleurisy started up a flare which gave me sore in my mouth. They feel like fever blisters on the inside of my lips all the way around my mouth. When rubbed up against my teeth, I want to scream in pain. Not much you can do for this except treat with peroxide. Hard to brush my teeth because the toothpaste makes the sores hurt so badly, so it is plain water brush and mouth wash. I've been told by doctors people with lupus have dental problems and I've had my share. Unfortunately, Medicare doesn't cover dental and of course my income isn't enough to pay a dentist. I broke a tooth three months ago and the pain has been horrible. Part of me wishes the nerve in that tooth would die already.

Rain moved in yesterday. Anyone with lupus will tell you the pain is bad when the rain and cold move in. For me it feels like an elephant has taken up residence on my chest. I haven't been able to do much of anything today. I had to force myself to put things on ebay only because I need the money to pay for meds this month. It takes a lot of work to list on ebay now and it is a gamble in this economy whether or not you sell anything. If I'm lucky I'll at least sell one of the nine items I listed.

Thanksgiving is next week. I just feel numb. The last thing I want to do is go into someone's home, but I feel obligated. So I go. The only reason I go is because I know it will be a fast meal and I will be able to leave after to go to the graveyard to put flowers on my mom, dad and brother's graves before it gets too dark. I love going to the graveyard. It is so quiet and peaceful on top of that old hill in the country. I could stay for hours, but when you go with someone, you really can't stay. I miss them so much...so very much.

And then Christmas...Sandy will be swamped with work at the church and then running home as fast as she can to take time off. That leaves me alone at the time I don't need to be. There's no one else to be there for me during the time of year I don't need to be alone. Every year I wish she would understand all I need is not to be alone during this time. Every year she doesn't. An old friend in TN told me I have really hung in there over the years. I told him there wasn't an alternative. This year I'm not sure about the alternative. I'm tired. I'm worn. I'm sick of being alone and I'm really sick of trying. If ever anyone needed a miracle, I do.

Thursday, November 4, 2010

Blank Pages...Blank Life

Sunday I found a single carnation in a vase and a card outside my door. It was from my church. Once a year someone brings a flower. Once a year.

When I'm sick, no one calls. When I'm in the ER, no one comes. When I'm in the hospital, no one visits. This is over several years now. My health has steadily gone down. I'm stuck inside more than I ever have been in the past. If it were not for Sandy, I'd never get out. Then again, the majority of my outings are to do the doctor, hospital and grocery.

No one encourages me. No praise for doing something right. No hugs. No laughter. No family. No group of friends. And now the holidays are hitting me hard. I have no desire to put up a tree this year. No desire. Already the Christmas and Thanksgiving shows and commercials are invading the air ways. I change the channels with light speed. I wish I could make the holidays go away.

This year is hard. It has been horrible. The last thing I want to do is celebrate it, stand in someone's home for an hour and "pretend" to be a part. I don't need a family for an hour a year. I need a family 365 days a year. Why is that so hard to understand? Compassion, love, encouragement. I feel more empty than I've ever felt before. If I were attached to a plug, I'd pull it from its source.

What would help me live? Move from the place where I am right now...help to do it. A place to live. A safe place. A quiet place where I can write again. A miracle. I guess it would take a miracle.

Tuesday, October 26, 2010

Pain Pain Pain

Today's temp broke records compared to the mid '80's. Was 89 degrees with high humidity. With rain going in and out, my pain is extreme. Weather is beating me up. Feels like I've been hit by a Mac truck today. We need rain so badly and I would welcome it, but it is as if the clouds just spit our direction merely to make us miserable.

Wednesday is colonoscopy prep day for me. No food tomorrow, just the liquid gook they give you to drink. I have to be at outpatient surgery at 7:00 a.m. Thursday morning. My last test showed precancerous polyps. That was almost a year and a half ago. Could not do a follow up until insurance paid for it. Who knows what they will find this time. I don't really care anymore. I just want to get it overwith.

Still not sleeping. My sinuses are infected and can't wear the cpap hose to breathe. Keep waking up sneezing. So tired...so very tired.

It is hard to explain to anyone who does not understand how it feels to be alone, totally alone. There is no comfort when you're sad, no encouragement when you need it, no "wow, you're really talented" to keep you going. Just silence. No love. No anything. Pain only scratches the surface of how hard it has been. I can only pray God will drop the walls of isolation and give me a small amount of freedom to breathe. I miss being able to sit on a porch and feel the breeze blow through my hair. I miss fresh air. I miss feeling safe. If I could explain where I am right now in my life I'd say I was in the farthest dark corner I've ever been just hoping and praying God would send a hand of compassion to me.

And if only there was a zipper installed on our bodies...it would surely help to step outside of this horrible pain.

Saturday, October 23, 2010

A Dream

I didn't sleep much AGAIN. All I can think is "YOU have to get this under control or you'll have a stroke or heart attack." Didn't help that my rheumatology appointment was just a repeat of the pulminary doctor's appointment the week before. He just read the report and repeated the same thing. Never mind the extreme pain running through my body. Never mind the fever of 102 I walked in with that afternoon. Never mind the chest pain I've had for a week now. That was the one doctor's appointment I knew I could count on, the one doctor who listened and cared. I'm growing more afraid he's getting jaded as each year passes. Now with medicare changing, I'm afraid I'll fall down the rabbit hole. No doctors want to deal with it. Neither do they want to deal with the new health care of Obama. I'm still in extreme pain. I'm still having chest pains. I still can't sleep. What was accomplished? Nothing.

I woke up after a couple of hours of sleep and made a list of things that needed to be done today. There were six items. I did one. I'm wiped out. Not fair. It isn't fair!! I'll wait and ask Sandy to help me with the second one on Sunday as it is a heavy one. Move the desk.

I dreamed last night that Christmas came. God sent me an angel who handed me a box. Inside the box was a key and directions to follow. My best friend and I got into her car and followed the directions to a beautiful beach house, put the key in the door and opened it. Inside the door hung a sign that read, "Welcome Home." God had sent an angel to give me a house, no a home of my own. He put that home by the ocean so that He would sooth and heal my soul and body from those who have bullied me, beaten my life down, ignored my cries. And the gift was free. I woke up with the lightest heart and the most peace I'd found in a long time. If and when God sends an angel with a box, key and directions inside, I will gratefully accept His wonderful healing gift no matter where that gift may be.

Update

I don't get out much anymore. Head to the grocery store and the doctors/hospital. On rare occasions I do something different. Unless it is free, I rarely go. Seems the government has decided the senior adults and the sick and disabled will not have a cost of living in their benefits yet again this year. Food, medicines, electricity, etc. keeps going up, but our pockets stay the same. I think the one who makes this decision needs to live with this income for one year. Maybe they believe in "the strongest survive" theory. My strength is waining.

Doctors added a CPAP machine to my growing health arsenal a month ago. Has been hard getting use to sleeping with this thing. I saw the Pulmonary doctor yesterday. He told me my sleep test results as follows, "You tested critical. You are teetering on the edge of having a stroke or heart attack because of the many times you stopped breathing during your test. If we don't get this under control soon, you will have a stroke or heart attack." The addition of the aneurysm, thyroid, systemic lupus of 16 years, plus many other things have pushed me to this point. The fact I'm still not sleeping with the machine has made it worse. Lupus also causes strokes and heart attacks. I have also had a TIA in the past few years.

He put the fear of God in me, gave me another sleep medicine to try since nothing else is working and made another appointment to see me. Normally he doesn't do this with patients, just leaves it up to them to call if they have problems.

Next week is my Rheumatologist appointment. He treats my lupus. Always a surprise when I see him. Depends on the area of damage or flair. This time around may hit central nervous system. It is so difficult to have a conversation and not find words. Feels like someone is wiping away my vocabulary from a chalkboard. Lovely lupus damage.

Last Thursday of the month is a follow up colonoscopy. I say follow up because the last one showed pre-cancerous polyps. Since my insurance wouldn't pay for a year, I've had to wait to have another.

It has been a hard summer of lupus flares. They still haven't stopped. This time the pain has been difficult. People look at you and think you look great. They can't see the damage on the inside. Stress has caused 99% of the flares and damage. My doctor says environment is everything when you're sick. I've lived in an environment that has caused my health to take a nose dive this past year. Just praying for an open door to a safer place to live. It has been a horrible year.

On the edge of holidays. Soon everyone will be so busy with families. Please remember those around you who have no one. I'm sure there is someone living near you. Please take time to stop by and say hi, share a hug and remember them. It doesn't cost a thing to share time.

Asking for your prayers and sending up some for you!!

Sunday, October 10, 2010

Just Rambling Thoughts

It is October. Fall air came and went just as quickly. We're suppose to hit 90's again today. I'm thankful the 100's are gone, but the heat still makes me so sick. For some reason I don't tolerate heat well. I can handle the cold better. Most lupus patients can't tolerate cold weather. Bring on the cold!! I'm ready and waiting.

This week starts the month of Doctor visits. Wednesday is the Pulminologist. New doctor for me. Okay now that makes five doctors now. Can't keep up with them all. Pulminologist, Rheumatologist, internal medicine, thoracic surgeon, gastro doctor. The following Wednesday is my rheumatologist and the last Thursday of the month is my follow up colonoscopy. Since insurance wouldn't pay for the follow up immediately (which it should have done because of results), I had to wait a year and a half to do the follow up. You'd think finding precancerous polyps would qualify for a faster follow up.

Sometimes I wonder if it is worth it at all. Twenty meds, five doctors, Systemic Lupus plus Aortic thoracic aneurysm (just below the heart - 4.7 cm), mononeuritis multiplex (permanent nerve damage in both feet and left leg), Insomnia due to lupus, Depression, arthritis in spine, degenerative disk, congenital spinal stenosis, Hypothyroid, Fibromyalgia, Osteoporosis, Osteoarthritis, TMJ, Chronic Irritable bowel syndrome, Sleep Apnea. I'm tired of being sick and tired. Mostly, I'm tired of struggling alone. I'm so tired of crying in pain at night and there's no one to help me when I need something. I'm tired of not having the strength to accomplish anything in the day because I'm so drained I cannot function more than two hours at a time.

I'm tired. I'm tired. Maybe it is time I just stopped. All of it.

I want to be able to go outside and walk again. Sit in a bookstore and read or just get outside and watch people go by. I can't do that where I live right now. It is unsafe. I only go outside now when Sandy and I go to the store or the hospital/doctors. I feel so trapped. Imprisoned in a world no one would want to live in. Afraid.

I am praying for a miracle, one that will provide a way for me to move out of this place into a safer one in January. Whether here or farther away, I have to get out of this situation. I can't bear it anymore. My doctor once said environment plays a key role in the progression of my illness. This has been the longest year of my life. I've grown weaker and sicker. My soul has lost its will to thrive.

This is also the anniversary of my brother's death. He died October 27, 1994 from Cancer. He loved Halloween so much and I can't help but love it, too, because of him. He always made it the best memory of my childhood.

I miss him so much.

Thursday, September 23, 2010

Where is Fall???

The heat is still horrible here. Was 95 yesterday. Humidity is still thick as pea soup. I'm so looking forward to getting out of this horrible heat. It affects the lupus so much. Just crushes me into a ball of pain. Can't function at all. How I wish I could live in a place with all four seasons, but a mild summer. Why must everything cost money?

I've stopped dreaming. I use to dream every day, believe anything could be possible. Until Lupus. The monster stole more than my health. It stole my friends, my strength, my ability to write, to concentrate, to live. Some days I think it isn't worth the fight anymore. No one cares. No one needs me anymore. My family has passed. Why am I still here? Today is one of those days. I'm struggling to find the strength just to stand in the shower today.

I started sleeping with a cpap machine. How on earth does anyone sleep with one of those things? I changed masks to something that fits better, but it still is hard for me to sleep with it. But then again the lupus pain keeps me awake. So in the afternoons I try to rest while wearing it just to adjust to the thing on my face. Since I don't sleep, it doesn't affect my sleep at night. It would help greatly if Rascal would stop waking me up twice in the night just to be petted.

Today I'm having a hard time just breathing. It is something no one thinks about doing. We just breathe. But I'm having a hard time breathing in and out. It hurts.
I cannot wait till the air cools down and I can breathe in fresh air. But living where I do, I can't go outside for long. Otherwise I would be accused of "harassing" the hispanic man in the other section. I'm so tired of being bullied. I'm so tired of being alone and sick.

If there is a reason to be on this earth I wish someone would tell me what it is.

Thursday, September 16, 2010

Lupus Day

No, not a lupus celebration day. It is a lupus FLARE day. Woke up with a flare. High fever after fever. Extreme pain. Felt so bad today. Would be so nice if I had someone just to do things for me today. On days like I this I wish I wasn't alone.

I had a visit from my health rep today and we changed companies that come in to help with my cleaning. Big stress reliever. Then I ended up back in bed with another high fever.

While I was in Walmart yesterday buying distilled water for the CPAP machine, another lady was doing the same. She said she had her machine for two years and she feels 100 per cent better. She would fall asleep during the day just talking with someone. Now she has tons of energy. I'm looking forward to when my body catches up to that level. With lupus flares, I wonder how much it can catch up. I'll be thankful to any level!

Accomplishments.....none today. Oh yes, I did have one. I planted some cat grass for Rascal. Have tried to do this for a week now. I use to be able to do so much more. Now it takes every bit of strength I have just to function.

So many take little things for granted. I wish I could do the little things again. I'm thankful when days allow me to do them. When the air finally cools off, hopefully I'll have less flares. Still in the mid 90's here. Miserable. Lord blow those cold winds and send us some much needed rain!

Thursday, September 9, 2010

Before I die

I've suffered a long time with this horrible disease. It has sprouted other diseases as well feeding off my weakened body. I only ask for one thing before I leave this earth: to live in a house again and in a SAFE place.

It has always been my greatest desire to move back to Wilmore, KY, the place where I went to college. The town is small, filled with kind, good people. All four seasons would be so kind to my already strained immune system. It is Sept. 9th and the temp today was 96 in Dothan. I can bear cold, but the heat makes me so sick.

My one wish would be to live in Wilmore again in a house close to the college. I'd love to be able to walk to chapel and enjoy the fellowship, visit the new library and an alum, or just enjoy the release of stress I felt there. When I was in college, my mother was very ill. I was stressed and my emotions were up and down. I always had to decide whether to go back or stay home when each quarter rolled around. Even when I was in school, I'd worry about her alone because my dad and brother both worked. God blessed me in Wilmore with the dearest friends I've ever had, with His love and healing. I never would have made it through the toughest years of my life without the love and foundation Asbury and Wilmore gave to me.

Now I just want to live in peace for my final years. The aortic thoracic aneurysm is growing to 5.0. It will either burst or I will be faced with open heart surgery. The surgeon already told me I stand an 80% chance dying on the table when he opens my chest because of the lupus. Please, dear Lord, send me a miracle, but not for the aneurysm or the lupus. Send me a miracle so that I can live safely and quietly in a place where I love so dearly.

Me, too!

Today I signed on Facebook and read a post about someone who needed to meet some new friends because she was feeling lonely. She was also bored. This lady has a husband and family. Her life is full. She was lonely. She was bored.

I use to be busy. I use to have a ton of friends. Then I was diagnosed with a horrible disease that has since caused one more illness after another. During that time I lost every member of my family. Every day I wake up to an empty apartment, not house, in a place where I don't feel safe. No husband, no family, no mom or dad, no children, no extended family. I am alone. Her loneliness is temporary, but I feel it every day of my life. I wonder sometimes when I wake up, WHY am I still here?

I took care of mom until she passed away. I took care of dad till he passed away. I took care of my only sibling till he passed away. My jobs were done. WHY am I still here, stuck in an apartment complex where I'm threatened and verbally abused? Alone. I turn on the TV just to have a human voice to hear. The animals I've been blessed with have been dearer friends than humans over the years. When I'm in the hospital, no one visits. No one cares.

I feel for the lady who is lonely and bored, but I'd trade places with her in a heart beat.

Flowers Hospital...again

I am always amazed at the most ridiculous occurrences Flowers Hospital puts me through. Whether it be outpatient, inpatient, or just plain tests. I've recorded many hospital incidents here in past blogs that are worth the find.

My most recent dealt with the Sleep Center. They were absolutely wonderful. Went out of their way to make sure I was comfortable and was taken care of, all except the woman who called the next day. After my first sleep in, the lady calls with extreme anxiety that I have to come back in this week because my oxygen dropped 88%. I told her I couldn't do that and we'd have to schedule another day. So she gives me a week from the night I went in. She wouldn't give me test results. Just told me they would give them when I returned.

So I returned. They told me they didn't have results to give me. I would be given a doctor's appointment and he would tell me. I slept with the machine and returned home. No information. Nothing. They gave me a sheet with a list of place to choose from to provide my CPAP machine. When they called back, I was to tell them which one to send the prescription for the machine. Yesterday, one week from my second sleep in, the same person called and asked me to give her the name of the place. I asked about my doctor's appointment because they told me at the last sleep in I would go to a doctor first. She said since I have medicare, I would go after sleeping on the machine because it was required.

I finally said okay and told her the name of the pharmacy I wanted to use. She said, "They don't have the machine." I said, "But it is on the list." She said the same thing. I said the same thing. "Why is it on the list then?" She said, "Sometimes they want free advertisement so they put their name on the list." Thinking this was utterly stupid, I picked another. "They don't have the machine." I told her to save me some time and just tell me WHO DOES have the machine. She said, "We can't recommend." I told her to tell me what the other patients do because I didn't intend to go down every one just to hear they don't have the machine. She said the other patients usually go by the doctor's suggestion. "And whom does he suggest?" I asked. "We can't recommend." "No. I'm not wasting time so you'd better just tell me." I finally won. "Breathing care associates," she said. And look at that...they are owned by Flowers Hospital. What a ruse!

Now that that was out of the way, I asked about the appointment and she assured me she would make the appointment for them to come out and set up my machine and then the doctor's appointment. Today...nothing.

I finally did get some test results after telling her I wouldn't give her a choice till I did find out something. She said I stopped breathing 31 times an hour and my oxygen dropped 88%. They upped the pressure on the machine the second night and I slept much better.

That's all I wanted in the first place.

I would give anything to have a decent hospital where I didn't have to worry about all of this. Now I have to remind myself they are suppose to make these appointments. If I don't hear from them, I have to call them back and asked what happened. I shouldn't have to do this.

Tuesday, August 31, 2010

Remembering my Dad

His birthday....would have been 89 years old. If he had lived, he would be home tilling in his garden. I'd be right there with him. Someone said they guess you never really get over losing someone. You don't, especially when you've lost your entire family.

I've learned so much since they've passed. One thing is they were right. It is very hard to find someone who cares about you. If you're not part of someone's family, you might as well be dead. I never thought I'd feel that way, but I do.

It has been days since I've seen another person. Been sick in bed. How I wish my life would change for the better.

Wednesday I head back to the hospital for more tests. Overnighter again.

Friday, August 27, 2010

Dreaming

Last night I slept long enough to have a dream and actually remember it. I dreamed I moved to a house, a small one with two bedrooms and one bath. IT was so quiet around the house, no others close by. Standing in the kitchen I could look outside the window while washing dishes at the sink. It was a picture window or at least it was to me, for the picture was trees, flowers, birds, squirrels and everything made by God. There was a small screened in porch on the back. Rascal loved it because he could smell the fresh air and still be safe behind the screen. An old swing was the only furniture on the porch. It was the only thing the porch needed. When I walked outside, I saw a vegetable garden in the back and flowers all around. There were peonies and hydrangeas, rose bushes and wildflowers everywhere. On the small front porch were two rocking chairs. I sat outside when the day came to an end and watched God's hand bring the night sky to life. It had been so long since I was able to see the stars.

Now if only this dream would come true...

Thursday, August 26, 2010

Amazing

Last night I checked into the hospital for a combination of tests. They wanted to test my pain levels, my lack of sleep, function of limbs, etc. etc. Lupus has caused so much damage that I can function on my own, but only because I have to. The people there were so very nice and kind to me. When I awoke this morning, they brought me a breakfast in. I was surprised by it as I had expected to be awakened and told to dress, sign papers and go home. For the first time in years I felt rested and at peace.

I could tell them the whys of lack of sleep....boom cars all night by my bedroom window, stress of a horrible landlord, unsafe living conditions, stress causing lupus flares. Lupus flares cause extreme pain and insomnia. Joints swell and keep me from being able to sleep or walk or even function. It is a vicious cycle. I've told my doctors this all before, but they insist on medical tests. If only they would listen. I understand why people commit suicide. Afterwards their loved ones and friends say they don't understand or didn't see it coming. I think they just didn't listen. I've cried help, screamed help, and no one listens. I will never judge another for the act of suicide no matter how wrong I think it is. I understand what it feels like to be trapped inside a body that doesn't work, having no one to talk to, no family to support me emotionally, no body of support, no spiritual support. I can't remember the last time I received a hug.

I wish they would have had me fill out a form asking me what I thought caused all the complications. I would have listed it as follows:

1. Loud boom cars at night keep me awake. 2. Obnoxious neighbor who harasses me stresses me out. 3. Pathetic landlord does not want to deal with obnoxious neighbor so she harasses me to get me to stop by taking away my rights or she will evict me. 4. Stress causes lupus flare. 5. High fevers set in, joints swell, can't walk, can't sleep. 5. Insomnia sets in. 6. Exhaustion builds up causing more fevers, swelling and extreme pain no pain medicine will touch. 7. Wishing I could unzip my body and crawl out! 8. Praying God sends an Angel to help me find a home that is safe, quiet and peaceful.

Hanging on by a fingernail.

Since they put all of the electrodes in my hair and on my face and legs, I had to take a shower to get the goo out. So now I'm going to bed to try to release the pain that has built back up since I've returned here.

Oh, Father, please send me help to get out of this horrible situation. Open a door for me to have a home in a quiet, safe place, preferably not in Dothan or Alabama. Send me your Angels to protect me.

Tuesday, August 24, 2010

Hospital Again

Heading to the hospital tomorrow night for tests. Such joy. Overnight again. Poor Rascal will have it to himself.

One step at a time.

I read this statement on a wall today. It was about being unreasonable. "I had a friend who had a $200.00 ticket to England and she offered to sell it to me. I wanted to go! I didn’t have $200.00 but that didn’t stop me. My family didn’t have a whole lot of money. I had just paid for a ticket that winter break to go to England. I could barely make the money to pay for college and supplies. That didn’t stop me. I was unreasonable and was determined. I asked around for ideas. I knew I didn’t know anyone who could lend me $200.00 or 2 people who could lend me $100.00 bucks…. but what my friends pointed out to me was that I knew 200 people who could give me $1.00. So, I was unreasonable and asked 200 people for a dollar. In the end I got $225.00." I've never thought of it like that.

Maybe I could be unreasonable and ask anyone who reads my post to send me $1.00 to meet the need of $800.00 so that I could move out of the place I'm in right now. It will take $800 for deposits alone. Miracles come a step at a time.

Going Downhill Fast

Well, it seems I made a huge mistake when I moved into the apartments where I live. Turns out the owner, who lives in Miami, won't let the management staff here even have the backed up pipes cleaned out unless they call him first. They are now extremely limited on what repairs they can and cannot do. I have not seen one pest control person in a year.

My kitchen sink backed up Tuesday night, water and soap suds everywhere. I was mopping for an hour to get it all up. Plunging, too. I called the office Wednesday morning. She said, "I'm sorry. You'll just have to deal with it. The maintenance man is out of town till Monday." A professional complex would have called a plumber. Now this sink has backed up on me at least once a week since I've been here. She blames it on the apartment upstairs using too much soap or washing clothes at the same time, neither of which makes any sense. The lady upstairs has been here eight years and says that's ridiculous, too.

Today my bathtub and toilet backed up all over the floor. A large roach was swimming in the bathtub water. I mopped and mopped. This has gone on now since Wednesday. My neighbor upstairs knocked on my door and asked me if I was having any problems with drains and I told her what had happened. She said she went to the office and told her that the drain pipe in front of our air units was overflowing and needed to be cleaned. She told her she couldn't do anything until Monday when the maintenance man came back. My neighbor took me around to show me where the top was off and poop and toilet paper was all over the ground. A feminine pad was right beside it all. This is extremely unsanitary and and no one should have to live like this.

Of course, the more you complain, the office writes you up and eventually sends you packing.

My lease comes up for renewal this Monday and I would give anything in this world to be able to afford a move to another place. But I can't afford it and can't do it by myself.

Prayers are needed....guidance would be appreciated, but I need action.
Thanks so much.

Dying from the inside

Before anyone asks what this has to do with lupus, the stress has caused a tremendous amount of flares which have caused internal damages that are irreversible.

Here's another update...the sewer pipe was washed out and repaired early Monday morning. This was after a backed up toilet, sink, and tub for a week. Now I've got another situation. If I ever needed the power of your prayers, it is now.

When I moved in, there was an Hispanic family in the section to the left of my apartment. They are still there. I had an encounter when he was blasting music from his place and I asked him to please turn it down. He acted like a jerk and chewed me out causing me to have to call the police. The next day the office manager told me he had gone in the office complaining about me. So starts the battle. He has tried to run over me twice while I walked to the mailbox, lied about my actions to the front office, etc. The latest occurred Wednesday night when I was on the computer and he was yet again blasting his car stereo out in the parking lot. This time I could hear it all the way through my apartment. So I walked five steps outside my door and asked him to turn it down. He just threw up his arms and walked away. I walked back in and slammed my door. The noise literally makes me physically ill.

Now everyone hates it. No one will say anything because they know she won't do anything but make them feel bad. A lady's son did go the Monday after that police incident and complain about him, but she told me I was the only one.

Today the office manager comes to my door and tells me he complained about me again and I was given a warning. I brought up about the no loud noises in the lease and she says, "Whose to say what is a loud noise and what is not?" I told her it bothered me and that should be enough. I told her the city even says that is a loud noise because there is a city ordinance. I explained how this makes me sick and the only problem I have with the guy. I'm always nice about it and he's a jerk. I never say a word otherwise. I'm the one getting a warning (which goes down in my file) and he gets to do whatever he wants. Now this for asking the guy to turn down his music.

In November, they had chickens in a 100 apartment complex. There are three senior adult apartments around his and he had chickens in the yard. NOT good. Then he put them in cages so tight they weren't even able to move. So I called Animal control. I couldn't let animals be abused like that. I asked them NOT to use my name because of the way the office situation was. Turns out the city has no law about barn animals so it took some getting around to get the animals out of the complex. Ridiculous. There was chicken poop on the concrete walkways underneath his place where people were walking. It was just nasty. She said the chickens weren't doing any harm to anyone and he could have kept them. I just thought what a nasty situation. Oh yes, they told the office I was the one who called animal control.

There was a Hispanic couple upstairs from me for about six months. They had parties every week. When I was outside sitting in my area, they were smoking marijuana and I could hear the guys coming out ordering drugs, watched the men drop off the drugs and take the money, and go about their business. I asked about the guy upstairs, but she said it was only one. I knew there were four others. She doesn't want to deal with people so she doesn't.

The girlfriend parked her car in front of my bedroom window on a Saturday morning and turned the music wide open while she washed the car. I went outside and told her to turn it down. She got mad, ran up the stairs and slammed the door. The next day I get a warning for "harassing" the girl. Was also told I "Harassed" the company the guy had. We spoke in passing because they were always there. So now there are TWO warnings in my file. One for harassing the girl and his friends and the other for telling the guy to turn down the music.

I've never had any kind of problems like these before. When you're a quiet person, live quietly, and a good life, you never ever expect someone to hit you like this. I told her I'd move today if I had the money. She said she didn't want me to move, but I told her she had to stop scarring my record over this petty stuff that wasn't true.

So now my nerves are a mess. I was already sick this week from stress and this just topped the cake. My doctor always says your environment will help or hurt your condition and right now this environment is killing me. As for prayers, I just keeping asking God to help me. I so wanted to live life to the fullest before I left this earth, but this place is going to take me out feet first before I get a chance to do so.

Saturday, July 24, 2010

IN MEMORY OF MISS PRISSY 1999-2010



Prissy died Friday, July 23, 2010. When we went to the vet, he said she was worse. When I saw her, she wasn't even there. Surgery was no longer an option. She had a 15% chance of survival. Whatever this was that hit her so fast, she couldn't fight it off. When I held her and talked to her, I noticed her eyes were filmed over. She was no longer there. He gave her the shot in another room and returned her to us in a casket. Sandy paid the bill on her card...one which I'll be paying back for a long long time. We left with a bill of $800.00 for the week.

Sandy and I took her to her house in the country. She and her sister, Jo, buried her next to Sandy's cat, Midnight, who died in December. I planted a mini rose over her. She finally made it to the country.

She was more than a pet, more than a cat, or an animal. Unless you've had a friend like Prissy, you'd never understand how hard it was to let her go. She was my family. She wandered into my life eleven years ago and has been my non-judgmental, loving, devoted friend. She was a far better friend than most people in this world could ever be.

My heart breaks. But I have no doubt in my mind that my brother was waiting for her to enter Heaven's gates. He was waiting for her and will take care of her till I get there. When I lost Squirt a couple of years ago, I knew my dad was waiting for him, his dearest friend. And when it is my turn, I'll walk into the gate with both of them standing there holding my feline friends.

Shirley told me the story of her mother and her cat. She put it better than anyone I've ever heard. I hope she doesn't mind me sharing this: Her mother said, "Ya'll all have somebody. Spitfire is all I have and I need to know that she is going to be taken care of." Just read it below:
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Mary, I understand about your feelings for that special cat in your life. I probably could not if it had not been for Mama. After Daddy died, all she had was her cat. Over a period of several years, including when she died, she had two. First was Missy. She died from some type of cancer. Mama was devastated for a while. But, she got another one from a batch of cats that she had started feeding there at her little house in town. Mama always fed stray animals and you know what that leads to. We were constantly getting rid of cats by relocating them. I finally told Mama that she had to quit feeding strays. She did. But, the last batch we had to deal with included one kitten that was so defensive we could not even catch her. She would get up under the porch furniture and spit and claw out at us. Mama said she needed another companion any way and she would tame her and she named her, very appropriately, Spitfire. My mama was very original in some of her expressions and I thought this showed originality on her part, since the cat truly was a "spitfire." Well, to say the least, she and Mama bonded. She became an inside/outside cat. Mama kept her a litter box in the house but she spent most of every day outside. I used to say that I had never seen a cat that would spend most of the day outside and then come inside to use the bathroom. But, Spitfire did, because Mama spoiled "her baby."

One time when Mama had to be admitted to the hospital, which became more frequent towards the latter days of her life, she was all worried about the cat and who would take care of her. I was all worried about Mama and what was going to happen to her. I said, and not too kindly, "Mama, please shut up about the cat. We will look after her. She is just a cat and I am more concerned about you." She made a statement that changed my view of this cat altogether. She said "Ya'll all have somebody. Spitfire is all I have and I need to know that she is going to be taken care of." I wanted to cry. I reassured her that Spitfire would definitely be taken care of. I never again treated Spitfire as a cat. I began to show her some special attention because that pleased Mama so much. and, in the process, I realized that I got closer to the cat also.

It was like someone paying attention to your child vs ignoring them and considering them "just a child." I also began to observe how Mama's view of people that came into her home was based on how they treated Spitfire. She never said anything unless someone was really rude to Spitfire, but I could tell how she felt. When I would stay with her after that or spend some time with her she would tell Spitfire to go over there and let Shirley rub you. Spitfire had a way of rubbing against Mama's recliner and expecting her to caress her. Sometimes her shoulders and arms would hurt her so bad that she didn't feel like doing it as much but she wanted Spitfire taken care of. That is when she would tell her "to go over there and let Shirley rub you."

So, I know exactly how you feel about your Prissy.


IN MEMORY OF MISS PRISSY
1999 - 2010

Thursday, June 17, 2010

Left Arm Braced

Two weeks ago, I sprained my left arm and hand. Still to this day to not know how I did it. Still I went to my last art class the following Saturday morning. As the day went on, the pain worsened and my arm and hand swelled. By 3:00, I went to the ER and waited for five hours to have it checked while Sandy visited with her family...her dad being in the hospital. I went through five ice packs while waiting.

Finally going back, I only saw a physician's assistant...what is healthcare coming to? He didn't have a clue as to what was wrong. Said my hand was too swollen to tell if there was a stress fracture. Said it was probably sprained. Thanks. I figured that out on my own. So much pain in 24 hours and I still had to ask for something for the pain. NOT impressed. Noticed they didn't give me an opinion form to fill out this time. Just as well.

Went to an orthopedic doctor last Wednesday. Said I had a severe sprain. Brace for twelve weeks. Such joy. Hard to do anything without my left hand even though I'm right handed. Makes me appreciate them both now! Arthritis and lupus are taking over the joints in both hands. Just can't help but wonder if both have done something to my left hand to make it so bad.

I see my rheumatologist this week. I trust him. Praying he finds out what's going on.

So many times I wish I had family left, someone just to be there to help me do things I can no longer do. I wish I had a church whose members did care, who visited, who reached out beyond their own doors. This horrible disease is taking its toll on my life. I don't know how much longer I can bear the struggle.

Tuesday, June 1, 2010

I Understand Now

When I was taking care of my dad and working full time, it was hard. It was also after my only brother died at age 46 of cancer and I had been diagnosed with systemic lupus. I was exhausted, frustrated, and sick. Add to it having to beg my dad to please change clothes so that I could wash them. He didn't understand why he had to change clothes when he didn't go anywhere and they weren't dirty. But he would finally do it and said he felt better.

It progressed to me begging him to please take a shower after days of not doing so. I told him it would make him feel better. He would finally give in and do it. I could not understand why he wouldn't just do all of those things automatically.

Now that my lupus has progressed and I'm having to count every hour in my strength, I understand. I'm too tired to stand in the shower. It wipes me out. I reach the point I have to do it, but it is now a struggle. I understand about wearing clothes a couple of days in a row, especially when I'm not going anywhere. Most days it is easier to stay in the same night gown and not change into anything else. I am just too tired.

Yes, taking a shower and changing my clothes always make me feel better, but the struggle is hard. I don't have anyone to remind me I'll feel better. I don't have anyone to be there in case I fall or pass out.

Yes, daddy, I understand now. You never said anything about me understanding, but I wanted you to know I do.

Thursday, May 27, 2010

Sick Sick Sick!!

Need I say More? I'm so tired of being sick! Just got over third round of sinus infections, bronchitis, lupus flares...in that order. Now I'm back to lupus flares from being exposed to the heat. It is already in the 90's here with high humidity. Summer always makes me so sick. I can handle winter better, but summer activates my lupus and I can barely function. I'm stuck in bed. Hard to concentrate to read when the meds you're taking make you so tired and spaced. I've dropped my book so many times I can't keep up which page I was on. I don't remember the next day what I read the day before.

My joints are so swollen it hurts to walk. Turning over in bed hurts as well. The air has to run a long time. Two fans go in my bedroom. The meds raise my body temperature. I'm so tired of being sick. Another reason why it would benefit me to move out of the deep south and back to KY. The brick wall remains....cost.

Since my hands are now swollen from typing, I must close the post. Still holding on and praying for a miracle, an open door to move north.

Wednesday, May 26, 2010

Thinks I've Learned

When you're literally alone in the world, and I mean alone, you learn more about people than you care to learn. I've learned Christian people are far more judgemental and cruel than those who haven't claimed just having a label of Christian. Church people can be the worse. Their word is not their bond. Promises are just words. Church has become a place of entertainment and social hook ups. The experiences I've had over the years at local churches would curl your hair!

If you don't know how it feels to be alone, have no family left in the world, are sick and alone 90% of the time, don't tell that person it is their fault. It is so easy for someone to judge another instead of ask why. Shouldn't a person see someone who is alone and sick and want to reach out to them? Shouldn't they want to listen and not tell them how wrong their life is and that's why they're sick? These same people have family coming and going from their place all of the time. They have a constant stream of love. How can someone who is blessed with this kind of security understand what it feels like to be alone and void in the world, to exist and have no one to hug them? How can they understand what it feels like to have no one tell them how much they love them, have a phone call during the day, get a knock on the door? If you haven't been there, how can you understand?

I learned this. If you can't understand, you can listen. You can hug. You can love. You can be there. Don't wait till Christmas as a jesture.

Today I realized I haven't seen another soul since last week. I don't know what I'd do without my cats. It is already high 90's here, way too hot for me to get outside. Stuck inside makes it worse.

When I check back on my site and see "idiot" responses from people who just don't have a clue, it doesn't anger me as much as it hurts. When did people become so hateful and cruel? If you don't want to read my site, move on. If it helps, I'm glad. You are reading about the life of a once active, educated, woman who burned the candle at both ends until the horrible stress of death wiped out her family and then causing a horrible disease of lupus to surface. It changed my life to an existence. When you walk down my path, leave judgement. Otherwise, just read. Life is too short to read hateful messages.

Life is too short. I realize it would take divine intervention to be able to move back to Wilmore because of the sheer cost of moving and not having the funds to do so. But if I could live the remaining years of my life and not exist, it would be in Wilmore.

Thursday, May 20, 2010

End of the Month

With a new medicine added to the ever growing list, I now have no money to buy groceries till June 3rd. I can always make do but not my kitties. Just hate having to take so many meds each month. The weight gain they've caused, the extreme fatigue, the changes to my life in not so good ways...yet they keep me alive. I wonder sometimes if the good outweighs the bad.

I had to set aside two prescriptions this month not to refill. Just too much month and not enough money.

Sunday, May 2, 2010

Sun and Lupus

Last week I was exposed to sunshine and had fevers of 102 degrees for days. By the end of the next week, I was able to go outside again. When I did, party animals upstairs brought out their druggies and stressed me out. Yes, when I feel unsafe I am afraid. When I get stressed, another flare hits. The office manager just made it worse. I would never recommend living in this complex. You're not allowed to defend yourself. You have to be a select few to get anything done. You have to be a minority to have the manager believe anything you say.

So it put me down again. High fevers of 102, swollen joints, etc. Stress is triggered and triggers a lupus flare. I've had chest pains for days. My digestive system has come to a halt. Friday night I stood in the shower and just cried. Another trigger for lupus. Saturday I went to the art class and realized I just wasn't good at it if I was sick. More stress. Came home and was so sick I couldn't sleep. Throwing up. Now have lupus sores all over me.

This morning I slept in. Got up to eat something and feed the cats. Went down again and slept for a few hours. Having lupus is like living in a four wall bedded prison. They can only treat the symptoms. No cure. My doctors just go through the motions. I feel like I'm just going through motions.

IT makes a difference if you have a family member or friend who loves you. If you feel loved, your life is worth it. Void of love, your health is worse. Mine is void.

Thursday, April 22, 2010

Same old stuff

Somewhere in Dothan there is a happy drug seller. Last night when I took a walk around the parking lot, I saw a guy come down and search around between the seats in his friend's car. The friend had come in during my first round around the parking lot. He, too, was searching for something in the same spot. The guy who lived there was very jumpy and afraid I had seen something so I abliged him. I stood there watching him and wouldn't budge. He finally decided to go back upstairs after speaking to me. He knew that I knew.

Friend's car was a typical dealer's car. Black with chrome trim, fancy rims, etc. I wrote down everything including the tag number. Remembered what the two white guys were wearing. After I ended the walk, I headed inside as I walked a different route than I normally do. Didn't want them to see where I lived. They had been watching me from the window.

Called the police, reported what I saw and included the car description and tag. Watched out the window. Twenty minutes later the cop car passed by, didn't stop, just kept going. So I called back.

"If passing a drug car is their idea of dealing with drug problems, I'm not surprised at the flood of drugs in this town," I said. Told the dispatcher what happened. Her solution was take down the info AGAIN and send him back out there.

Half an hour later, no cop. The dealer drove off with no problem.

THIS is what happens in Dothan. This is why I would give anything to move. How I pray God will bless me with the finances I need to move. The stress here is killing me. Anyone who has lupus or knows someone who does knows stress is the one trigger that activates the disease and does the most damage.

I "Scream" help!! No one hears. I think people have becomes so uncaring that they listen only to those who belong to their own families. If you're alone, you're out of luck.

Lord, prove me wrong, please. Send someone to help me.

Tuesday, March 30, 2010

MY Letter to the Editor for Local Paper

This is MY Letter to the Editor.




Dear Letter to the Editor,
I write this letter anonymously in hopes you will print it as such. It is my desire the content will make someone think and make a change down the line, maybe make a difference in that neighbor’s life next door. It is not my desire to collect a bunch of ignorant opinions that get posted for the Eagle.
I read in a recent Reader’s Digest an article on “15 Secrets the Emergency Staff Won‘t Tell You.” Number 8 stated “One of our favorite lines is "You can’t fix stupidity.” http://www.rd.com/living-healthy/15-secrets-the-emergency-room-staff-wont-tell-you/article175023-7.html#slide. I realize there are far too many who live to post opinions instead of learning from the experience of another. However, if one person reads this and realizes their actions affect another person, it was worth all of the recreational opinion posters who have nothing else to do.

I’ve lived in Dothan for over 25 years now. I only returned here to take care of my parents and sibling till they passed away. Shortly after, I became chronically ill and was trapped. I never realized just how trapped I was until the label of “physical illness” was ingrained on my life.
I’ve learned over the past 25 years that the majority of Dothan citizens care only about what family name you came from and how many generations that name goes back, how much wealth you hold, and what position in life you hold. I learned this by attending church, the one place where there is suppose to be a place for everyone, where labels are not suppose to be placed on people, where love is suppose to be abundant. I learned this from working in a church where behind the scenes members and ministers are not what you see on Sunday and Wednesday nights. I’ve learned over many years now that just because you’re a member of a church doesn’t mean it matters that your name is on a prayer list or you are in the hospital. It depends on who you are whether you receive a visit or not.
I learned many people think it is your fault if you are sick or you don’t have enough faith to be healed. Maybe they should have a talk with God before labeling someone. One day they may remember those words as they walk in the same shoes. Unfortunately many say it will never happen to them.

I have learned it is easier for people to judge than to ask why. Gossiping about your next door neighbor brings more entertainment than asking why they are sick or never have family visit.
I have learned that even though there is a noise ordinance in the city of Dothan, the City Police Department does NOT enforce it. I know this because my windows constantly rattle from the booming car stereos that pass the road outside of my apartment or in the parking lot outside my bedroom window. I know this because I see the police car behind the loudest booming car waiting behind a red light, the police car that does not stop the offender or give him a ticket because the judges won’t enforce the tickets once it reaches court. Perhaps the judges should have to live with the boom cars outside THEIR windows 24 hours a day to finally understand WHY there is a noise ordinance to begin with.

I lived next door to a preacher for ten years. I learned just because someone has the title “Reverend or Dr.” before their name doesn’t mean a thing. I learned that preacher who does not invite you to his church, who never has a kind word to say to those who live around him unless they are socialites or wealthy, and hates to go to the hospital and nursing home (as he shared), really should be looked at twice. I learned that a preacher who was asked to leave a church was asked for a reason. His congregation should remember there are two sides to every story. I learned a preacher who hates animals so much he puts animal traps in his backyard every day of the year and has them taken out like the trash says more about his character and ministry than any title a seminary could ever give him. I learned from my father that the way an animal and child reacts to a person is the best character indicator you can trust. I also learned that in this example, the animal indicator pointed to jackass instead of Christian.
I learned there are Christians who say many things, but their actions, or lack thereof, say more. Every life touches another whether you want it to or not. It leaves an impact. Talk is cheap. Actions speak louder than words. I’ve learned to act. If you’re going to live on this earth, make a difference. Reach beyond the comfort barriers of your family to someone who needs a kind word or love. Sitting in a pew makes no difference. What difference did you make today?
I learned there are far too many people who listen to preachers who misquote the Bible and still say “Amen!” I learned a long time ago to think for myself, follow the scripture and really listen. I learned just because a man chooses to stand in the pulpit and preach God’s word does not mean God chose him to be His minister.

I learned the city police will not come to your home to arrest a neighbor when they are high on drugs and beating up their roommate unless they “see them do it” and will not let you file a statement unless they want you to. Lucky for me, I learned the next day to call again and ask for a Supervising Officer to inform them the policeman didn’t do his job. They do follow through. Unfortunately, if you think a business is being broken into and give the city dispatcher detailed location, the officer may say the following “I couldn’t find that place and won’t go back unless she speaks to me.” Funny, there was only one daycare on that corner.

I learned many who live in Dothan surround only its select citizens with acceptance and love and pushes the others to the side. Elected officials will tell you how wonderful people treat them. So will the social elite.
I learned there are far too many people who don’t want to get involved when they see a person or an animal being abused, see drug dealers making front door deliveries, see senior citizens get bullied for trying to stand up for themselves.
I learned there are too many apartment complexes in Dothan who have managers who do not enforce the rules printed on the lease you sign as long as you make your monthly rent payment. I also learned there are some who own rental property who hold status in city government and own long time businesses who would let the bedroom ceiling fall in on the renters sending them to the hospital before they would repair it. This one was from experience.
I also learned property owners and managers need to run a background check before they fill that empty building just to put money in their pockets. Try thinking about the person who lives next door for a change.
I learned if someone keeps chickens in a large apartment complex and you call Dothan Animal Control, you are told the following by the officer in charge: “ Well, there is a fine line here. Dothan is a farming community. I can’t do much.” This was the dumbest thing I ever heard. I also learned they do nothing and chickens continue to live at the same complex inside the circle. I also learned if you go down the proper line of command, you still have chickens living in an apartment complex. This line is as follows: Humane Society (they have to go through Animal Control), Animal Control (they can only give you the officer in charge), Police (they say call Animal Control), Dothan Planning and Development (the lady couldn’t believe he said that and still can’t believe anything was not done about it). So call the Sheriff’s department and see what happens next. Never say anything to the apartment manager. They always say “I wouldn’t worry about it” or “yeah, they’re different.”
I learned if someone comes here from another country, they should learn how to speak English. If you are aware of free English classes, pass the information on. If I went to another country, I would learn their language. I also learned managers would rather blame language barriers on problems than take care of the problems before they occur.
I think that would be doing their job.
I have learned teens who wear their pants so that their butts are poking out below their belts are being sent the wrong message. Indecent exposure is indecent exposure. I remember that being against the law as well. The last thing I want to see is someone’s butt poking through their underwear. The very last thing I want to see is some teen walking past my door with his belt buckle sitting on top of his thigh exposing his underwear in front. Embarrass him? You better believe I did. If you have to hold your pants to walk, you have no sense to walk.
I’ve learned you have to tell teens this is NOT a cool thing. It is a stupid thing and makes them look stupid as well. Life is hard enough without labeling yourself as such. You cannot open doors for your life by opening your pants and dropping them to your knees. If their parents won’t tell them, if the police won’t tell them this is indecent exposure, someone has to tell them. If it embarrasses them, maybe it will stick.
I have learned if I go for a late night walk for fresh air, I will find something illegal or morally wrong outside my door in Dothan. I hope I have taught the teen male and female who chose to park in front of my window to have sex on a Tuesday night that not only was that incredibly stupid, but thanks to a dead battery in the get away car, you don’t park in an apartment complex parking lot to do your thing. You might get a full lecture from a retired teacher, the fear of God put in your soul, the threat of calling your parents to come get you, and what seemed like a few minutes turn into eternity.
I have learned no matter what the local news says about crime being down in Dothan, that doesn’t make it true. I think people should use common sense and realize this.
I have learned over the past few years just how much I hate living in Dothan. Before you decide to post your remarks (please see second paragraph and remember number 8), believe me, if I could afford to move out of here, I would without a drop of regret. It is hard to live on a fixed income created by a physical illness I never asked for when I worked my way through college. Remember your life may not turn out the way you want it to either. It is not my desire to collect a bunch of ignorant opinions that get posted for the Eagle, but if one person thinks and makes a change, it was worth it.
I learned that I’m stuck in Dothan unless a miracle comes my way to get me out of here. Good thing I still believe in miracles.
I learned the hard way my faith is not in people, but in God.
We continue to learn till the day we die. I’m willing to learn the good things about Dothan and wish I could think of something now. If you want to prove me wrong, please do so.
One of my favorite quotes is as follows: “Better to keep your mouth closed and be thought a fool than to open it and remove all doubt.” Quoted by many, but the meaning comes from the Bible: Even a fool, when he holdeth his peace, is counted wise: and he that shutteth his lips is esteemed a man of understanding. -- 'Proverbs 17:28.
A fool? Maybe. But a fool keeps silent and allows someone to bully them. A fool believes it is their fault when the other doesn’t want to deal with the problem they caused by the lack of their actions and intimidates them to keep them quiet. It is the fool who takes and takes and takes and never says “enough.” This fool says enough.
Sometimes you just have to share what you’ve learned in hopes another makes a change along the way.
Anonymous

Saturday, February 6, 2010

He We Go Again

This has been a horrible week. Harassed by a bunch of teenagers next door, Mexican guy jumped in my face, and now I've encountered the traffic of drug abusers/sellers up and down the stairs above me. What a joy to move into! This, of course, says I'm not in a safe place. Should have took the hint Christmas when someone tried to break in my door.

My nerves are shot. I'm sick. The vasculitis in the veins on the side of my head has returned. Last time it caused a ministroke. And I have nowhere to go and no one to help me. I'm so tired of living in this horrible town.

Imagine being alone, no family to call when you need help, no one to defend you when you're in danger, calling the cops....no point in that. They have to have "reason" to go in and it has to be their definition of reason.

Tonight I watched the bunch from upstairs open the trunk, pull out the inside compartment, remove whatever they were hiding, pour water all over the ground to wash away what spilled. Yep, in drug central. The guy who is renting has a clean record, but the people who are his "friends" obviously do not. Why does it take four people to go to a car trunk TWICE and come back with "nothing?"

There were so many cars from that apartment that the lady who helps me on Friday couldn't find a place to park. They took mine, too.

Tell the office? Are you kidding? He has a clean record. No way she will investigate. So do I stay in this mess and continue to get sicker and sicker from the stress or move yet again? Where do I go? I need someone to help me, someone here. Someone who knows the condition I'm in and know the more stress I'm in the more ill I'll become. I guess I need someone to care enough to DO something.

The car I saw with the trunk.....let's start keeping records now...plum color Chevrolet Malibu Tag AL 38C10C6. Came from Gary Russ in Greenville, S.C.

Thursday night I interupted three guys ordering drugs as I walked to the mailbox. Stopped to asked if they lived there. "No no no!" The one guy nearly jumped out of his skin. So I made him more jumpy by standing there. They said their "Friend" lived in the apartment upstairs. White Maxima 35 XE, FL tag 004 1GX.

Helped to keep notes the last time I had to live around drug addicts. Took them with me when I headed to the police station even though the police didn't do anything.

Saturday, January 30, 2010

49.......and counting

Day to day....49.....and counting to what? More illness? More decline due to illness? Since first diagnosis, I've faced so many complications, hospital stays, tons of medications. I'm tired. I'm tired of being sick. I'm tired of being tired. I'm tired of not having a quality life. I so long to go back to school, but how could I do that? Where would I get the funds to get the one thing I desire the most....a master's degree.

I use to write for hours. Fill so many books with thoughts. Then I was living. Had a quality of life. Now I'm just tired. So very tired. So tired of being alone. So trapped in a place (meaning town and state) I don't want to be in. Sometimes wishing this horrible disease would kill quickly instead of a slow mentally painful death.

But today I woke up and could not get out of bed for an hour. I could not walk across the room. I just cried because there was no one there to call for help. I had to lay back down and wait till my strength was regained, the swelling went down and I could stand up without falling. Two sweet furballs curled up next to me to remind me I was still there for some reason.

God, hear my cry. Please get me out of here or take me out of HERE.

Friday, January 22, 2010

Depressed

Is it chemically as diagnosed by the doctor? Is it birthday? Is it loneliness? I don't know. Just depressed.

Wednesday, January 20, 2010

A Quiet Lonely Day

So far it has been a quiet and lonely birthday. Diane came in and cleaned for me. She needed to talk today so I listened.

I think I'm going to sleep for awhile. These meds just make me so tired.

Sunday, January 17, 2010

Still a Struggle

A New year....still a struggle. Cost of meds went up. Med insurance went up. Too expensive to turn on the heat even though it has been below freezing for two weeks here. The rent is a tad cheaper, but income did not go up. Just the cost of living and everything else. Still counting every penny. Why does illness have to be so expensive??

Would love to have a miracle.

Remembering My mother

On Monday, Jan. 18th, my mother died 25 years ago. I can't believe it has been 25 years. I was home alone when the call came from the nursing home, where she had been for a few short weeks. She died two days before my 24th birthday. I spent that day in the funeral home. They buried her on the 21st.

She suffered so much from diabetes which led to her death at age 64. From a person whose entire childhood involved looking after a mother who was sick from this disease, please please please take care of yourself if you have a family.

Tuesday, January 5, 2010

49 and Counting

I can't believe I'm almost 49. On Jan. 20th, I'll be 49.....49! Why don't I feel like 49??? Some days I feel like 149, but most of the time I don't. I don't always recognize the person in the mirror looking back at me, but just to think I'm almost 50 makes my head hurt.

Still have to jump the memory hurdle of Jan. 18th...the day my mother died. I remember spending my 24th birthday at the funeral home. My brother and dad decided to have the funeral the day after my birthday on the 21st. Her birthday is the 25th.

So many days stacked on top of each other...so many memories tangled together.

SO Thankful!

It is in the low 20's here tonight. It was 39 here today. I am so very very thankful NOT to be living on Laurel Ave right now. If I were, I'd be literally freezing to death. The dominoes would surely have fallen as well....heat break down, pipes burst, my system hits the lowest point, lupus flare, hospital stay.

Tonight I am sitting at the computer where I can type and FEEL my fingers. I'm not freezing. The cats are curled up on my bed. It may be warmer here, but I still have my heated mattress pad on the bed. They aren't stupid!

I'm so thankful God sent me good people to rescue me from the horrible living situation I was in.

Sunday, January 3, 2010

A Nice Treat and Getaway

Thanks to a wonderful friend, a friend and I were able to go to the beach for a few days. He and his wife have a time share on the beach and were unable to go. Since it was paid for, they offered it to us. Was so nice to be able to spend time away from Dothan. The waves have such a healing property to them. I could sit on a balcony and let those waves wash away all the problems in the world, the pain in my body, the illnesses I fight on a daily basis.

It was terribly cold on the beach. While walking, picking up shells, etc., the wind cut right through my jacket. It was so bitter cold that I found a hat before going out again. When my fingers thawed out, the pain was intense. I can't remember fingers feeling like that before. Good thing I don't have much feeling in my feet.

Walking back to the condo, I passed the outdoor pool. Two seagulls were taking a bath. I stood there watching them for a long time. They didn't let me bother them. They just enjoyed their bath.

If I could go to the beach once a month and sit among the healing waves, what a wonder my soul and body would behold!