Saturday, December 26, 2015

Now I Understand

Christmas is the worst time of the year for me because I have no family and it is a time that revolves around family. I've always thought I was being punished for something... having a horrible temper as a teen, not having enough faith, not taking opportunities when they were given to me. I've questioned what I did wrong my whole life.

On Christmas Day, I perused through the tons of family Christmas photos. Some had so many people that I couldn't count them all. Spoke to a friend Christmas Eve night and he said he was going to a nephew's house. They were having an overflowing amount of family there.

I said, "It seems as though some are overflowing with family and some have none. There doesn't seem to be a middle ground."

It then dawned on me as I reflected back to the photos of families. They just don't have a clue what it is like to be alone. Not a smidgen of a feeling how overwhelming it is at Christmas and throughout the year. It isn't because they don't care, it is because they just don't get it.

When I do find myself in the presence of others talking about their families, I am put in position of having to explain why I never got married or had children, why my family members had died years ago leaving me here alone and explaining that there's nothing odd about me. I simply want the same things as they do: to be loved, to love and feel like I fit in somewhere. So if you are reading this, please know asking me why I never got married and assuming all kinds of bad reasons puts you in the "I don't really care so I'll make it up the way I want it and spread gossip" group.

I have found myself involved in others' family Christmas days before. It is there I feel the extreme loss of my mama, daddy and brother. It is there I am reminded how alone I am. It is there I feel more lonely than I do any other time of the year. Christmas is a time families share old memories, make new ones and look forward to tomorrow. I'm just standing in the corner along for the ride because someone didn't want me to be alone. I sit in the background listening to them talking family talk finding no place for me to fit in. So I remember my own Christmas days, family memories, and cry because I don't have a future with my family. And I feel more alone than if I had stayed home alone in the first place.

This world has changed drastically. Those who once were compassionate to people outside their safe little world are now afraid to be so. It may be a scarier time, but compassion and empathy are needed now more than ever. It doesn't cost a thing to listen to someone and when I say "listen" I don't mean respond with "I....me...". I mean listen, really listen for it is the sign of a true loving heart. There are many of us out there, those who are alone 365 days a year. Most people remember to care at Christmas and forget the 364 days left. Try some compassion this year. Empathize with someone. Get out of your safe family cocoon and reach out to a hurting soul for a change. That family is a blessing from God to you. Try sharing a blessing with someone who doesn't have one.

Wednesday, December 23, 2015

Past Memories

Memories from the past surface with the slightest thought. I watched "A Christmas Carol" with George C. Scott (Best one in my opinion). It was released in 1984, the December my mother made countless trips to the ER after going into diabetic comas. Living in the country, it took an ambulance twenty minutes or more to arrive. Those hard memories came flooding back last night. It was an extreme December and sad Christmas. She died the next month a week before her birthday, two days before my 24th birthday.

The following December wasn't much better. My daddy fell into a deep depression and had been drinking when I found him sitting on the edge of his bed. He had a gun in his hand and was planning on taking his life. This was on Christmas Eve. I was the one who had to take the gun away from him, his 24 yr. old daughter. And you wonder why I hate this time of year?!

I have a hard time recalling good memories anymore. With each year this horrible disease removes my concentration, memory, and on some days my ability to communicate clearly. I've reached the point only recent memories come to mind. The others have been lost in the fog.

It is the night before Christmas eve and I'm sitting home alone. Rain and thunderstorms are pouring in bringing pain and suffering once more. I'm so tired I can barely pull myself off this old love seat. Tomorrow will be just another day filled with many things I can't seem  to accomplish. So the piles of to do grow higher with the passing days. While families gather tomorrow night, I'll be sitting in front of the tv for company. Enduring. Enduring. Enduring.

I remembered a time I couldn't go home for Christmas. It was in December 1992. My daddy's immune system was low and I came down with strep throat. I found myself washing clothes on Christmas Eve in the apartment laundry room. No one around. It hurt so much not to go home. It was the first Christmas eve I ever spent alone. In two day's time I had broken the fever and I made it home with my cat, Squirt, in tow. My brother picked me up and Squirt slept in the back window of his car. I was never so thankful not to be alone.

Now I have to endure the aloneness, the loneliness, and wonder how on earth my life has ended up like this. I never planned to be sick. I never dreamed I'd lose my family by the time I was 35. I never dreamed I wouldn't have a family of my own. No one thinks about these things. They just happen.

I'm not the only one alone during Christmas. Many people are alone. People who live near you. In your complex, in your neighborhood. You pass them every day. If you know of someone who is alone, please take time to do something special for that person. You will never know how much they would appreciate it.

Friday, December 18, 2015

Geesh!!!

Well, my stove died on Sunday. It was Thursday before someone could come out and check it. He said the stove is over 40 years old and he may not be able to find a part. If not, they have to replace it. This isn't so simple either. They would have to cut part of the cabinet out as this is a drop in stove.

One week without a stove. Now it will be after Christmas before it can be repaired. He found a part and had to order it. You take so many things for granted until you don't have it anymore. This hit at a bad time - Christmas. No baked cookies. No cakes. Not even popping a frozen pizza in the oven!

====================================================

The new year is coming. After the first, my medication will almost double in cost. Of course Social security did not go up. So now I have to find a way to get my meds and buy food. I've been juggling between the two for quite some time now. My fridge is so empty it echoes! My pantry isn't much better.

Cost of living, electricity, food, heat, all go up. Income. Nope. Still don't have a rheumatologist. Looks like this is gonna be a stressful new year.

Tuesday, December 15, 2015

Another Sleepless Night

It has been two weeks since I've had a decent night's sleep. Started with stress from a neighbor, went to pain, swelling, and then anxiety. Bad thing is lack of sleep affects lupus. Lack of sleep flares depression and causes anxiety. The three together prevent sleep. A catch twenty-two. I've wondered how long you can go without sleep before it kills you.

So my friend, Buddy, and I sat up watching the debate. I'd rather hear it for myself than let some newscaster tell me what to think. Most of their reporting is slanted to cause deception.

Buddy has an eye infection in his right eye. Poor darling. It looks like puss is filming it over. I wipe it out for him every day and have allowed him to sleep inside at night in hopes it will be on the road to healing up. He usually sleeps on the back of the sofa. Tonight he crawled into the recliner with me. When I had to get up and answer nature's call, he settled into the chair and went to sleep. I'm thankful he is feeling secure enough to sleep inside for now even though I know he will be quite ready to go outside in the morning. I think he must have injured it in a cat fight or dog fight. He's been known to chase dogs down the street.

This little cat was on my doorstep within weeks of my moving into this apartment. I call him my little angel because when I am so sick and can't leave the apartment, he makes a point to hang around more. He's the best neighbor I've ever had. I wish I could afford to do more for him. He's well fed and I'm doing the best I can. He is sleeping now safely in the confines of a place where someone loves him.

I can honestly say I hate the holidays. Each year it gets worse. I can't seem to bear it. I watch the Christmas movies, cry, face my losses, and hope tomorrow is better. This time of year is overwhelming.

I don't want things for Christmas, I need family. I miss mine so much. I'm no different than anyone else - I need to be accepted, loved, encouraged just like anyone else. We live in a society where it isn't popular to reach past the security of your family and draw someone into your life, make a difference in theirs. When you've never been married, there must be something wrong with you. When you are sick and carry the burden of a chronic illness, not many people want to invest any time with you. I've had more people go over the years than have stayed. Want to weed out your friends? Get sick. You'll soon discover who were true friends and who were not.

Sometimes I wish I could fall asleep and sleep past January 1st. Skip over the loneliness and aloneness. Skip over the silence that is deafening. Silly me, I can't even sleep a few hours!

 Just endure. Just endure Just endure. 

Friday, December 11, 2015

No Umf!

No umf! Just no desire to do anything these days. With this crazy weather pattern jumping up and down causing severe pain in my body, the tooth I have suffered with off and on has broken in half, and my spirits are just low.

Weather has a great deal of influence on anyone with lupus. We're like walking barometers. When the pressures change, we hurt. Unusual temperatures soaring up in December (mid 70's by Sunday), lots of rain, then temps bottoming out by the end of next week (high in the 30's) takes a huge toll. Even though it is warmer outside, the apartment is cold. I've tried not to turn on the heat since the bill is so expensive. I'm tired and worn out. Lack of sleep due to stress and pain hasn't helped. I finally bought a bottle of aleve and some sleeping pills just to gain a little rest. With all the medications I have to take, I'm surprised at how wonderfully Aleve works with the pain, especially my back pain.

One of the other physical side affects of having lupus is dental issues. I've lost three teeth, two by breaking off and in time the other piece falling out. Trouble is insurance doesn't cover dental and I have to choose now between food or medication. Dental costs are not an option. But I would give anything to have this broken tooth removed.

I've heard several people say they had no desire to go Christmas shopping this year. Yet if they have families, they have to face the crowds at some point. How I wish they would look around them and see not everyone has a family. Some have no one. Be thankful for who you have.

My spirits are low today. Weather? Maybe. What's going on around us? Most likely. Bad neighborhood? Absolutely. I am amazed at how much my neighborhood has gone down in the past three years.

With Christmas only a couple of weeks off, depression becomes more prevalent, especially to those who have lost loved ones or those who are alone. Please remember someone whose path you may cross could be suffering from loss and just need a smile or a kindness shared with them. Let it be the Christmas gift you share with others. The gift that keeps on giving.


Monday, December 7, 2015

Geesh!!!!

Since last Monday, my nerves have been a wreck! With it has come a huge flare. My joints are swollen, I can barely walk, fevers have hit me hard and riding as if I've been on a roller coaster. My muscles are weak. The past few days it felt as though my bed was vibrating. Thinking it was the cats jiggling around, I just poked them hoping they would stop. Problem is the vibrating never did. I was the one vibrating. My entire body is shaking. The only time I don't feel it is on the rare occasion when I can sleep. And that is a rare occasion these days. 

I haven't had that symptom since living in Dothan. I remember my former rheumatologist taking a piece of paper and placing it on my outstretched hand to see if it would jiggle off. It always did. It is now doing the same. 

My nerves are shot. The flares are back. The stress is bad. And it seems like every day something bad happens. Some bad is mild bad and some is extreme, like last Monday's idiot parade where I had to call the police. So many days I wish I could just fall asleep and sleep for a week, escape the worries of this world. I think about my college friend who passed away in her sleep last January and how lucky she was. She has no more worries to face, nothing to fear anymore. 

It is hard to live a balanced life when your life is constantly battling illness and you're doing so alone. It is hard to deal with the small things when the big ones come crashing down around you like not being able to find a decent doctor you can depend on to look after the important things. 

I'm tired. I'm worn. I'm sick. And I'm sick and tired of being sick and tired.

Monday, November 30, 2015

Stress Ride!

Stress is a bad thing for those who suffer with lupus. My former Rheumatologist told me stress would be deadly with an illness like this. So how do you deal with it when the world around you is going crazy? I've been sick since Saturday. This won't help a bit.

Tonight the troubled neighbors who live two doors down from me started a fight in front of my place in the middle of the road. They chased each other in vehicles down the street, one trying to run the other off the street. The fight returned to their front yard with her screaming like an idiot shouting all kinds of foul language. He jumped in his friend's truck (who by the way should  be forced to put a muffler on it) and tore out down the street again. She proceeded to beat his vehicle and her own with a baseball bat. What an idiot!

I called the police at the beginning of this fight when it occurred in the street. After thirty minutes and no police, I called back. I should have known the ditz who took the complaint didn't get it right. So I told her I wanted to talk to the cop. When he finally showed up, I explained what happened. He told me dispatch had reported it as "people yelling at traffic." NOTHING like my report. I told him it was a good thing guns weren't involved or he would be filing a dead body report.

Now Wilmore is a very very small town. Takes only minutes to get to the police station. It took thirty minutes to arrive because a dizt didn't listen to me and reported it wrong. Even though I told them we were at the dead end side, he was at the other end. Scary to think these people are protecting us.

These idiot neighbors moved in a month ago. It wasn't long before her live in boyfriend stabbed her and broke windows and doors. Then she took in another boyfriend - another idiot who things loud boom cars are a great thing and his pants drag past his knees. I would give them no second thought except for the fact she has a young child living in this mess. As long as they are in that apartment, I have a feeling the police will become frequent visitors.

When I was growing up, we called behavior like this as white trash. Now it is known as typical. What a crying shame this world has come to this. Most of the time people like this don't stay long. I'm hoping and praying this is the case. Every week it is the same thing - burning the road in front of my place with his loud boom radio and no muffler junk truck. Hours of this will destroy you. And I wonder why my sleep pattern has been destroyed.

Tonight I had to ask myself, am I in Dothan or Wilmore? Sad to say the cops are faster in Dothan. 

Sunday, November 29, 2015

Someone Shared My Story

Someone shared my meeting Kevin Spacey story on their website. So I'm sharing their website:


http://chasingspacey.tumblr.com/post/103027150522/here-is-a-feel-good-kevin-story-for-ya-meeting



Sitting in the Dark

It is a cold rainy yucky day in Wilmore. My apartment tends to be dark anyway, but during cloudy days, it is very dark. The weather makes me hurt all over. Osteoarthritis, fibromyalgia, systemic lupus, plus so many other illnesses I battle every day, cause a difficult life.

I finally put up my rinky dink Christmas tree. Love the lights. Keep them on instead of lamps. Special ornaments from former students, those I've picked up along the way, photo ornaments of family, and the nativity set that belonged to my brother combine to bring a light to a somewhat dark life. I am reminded we are to be a bright light in the dark world and with each day the world becomes a little darker. I know living in a dark apartment dampens my spirits. When a little light comes in, I feel better. Lord, empty me of the darkness, the sadness, the thoughts of myself and fill me with YOU.

My thoughts are with my friend whose mother is dying. She was put in hospice today. With her struggle I am remembering my own mother's suffering and death. She died two days before my 24th birthday. When someone is suffering, it feels like a wild roller coaster of a ride. You have no control, can't make it stop, when you think things have leveled out, the up and down dive begins again. Five times to the ER during Thanksgiving. The ambulance had to come out to the country where we lived. Took 45 minutes every trip. Each time I would pray she made it. She did. Then in January we had to transfer her to a nursing home. She lived two weeks. The day she died, she bowed her head and was gone.

My circumstances were different. I was my mama's full time care giver. The day I graduated from college I left KY, walked in the door at home, and started the job. I couldn't even go outside until my daddy or brother came home from work. She required someone in the house with her at all times. Being a working class family, we couldn't afford to hire help. It was me or nothing. It was the hardest thing I ever did, but I'd do it all over again.

I've thought of her so much the past few weeks, especially since my friend's mother is suffering so much. No matter how much time you are given, death is devastating. They take part of you with them when they leave this earth.

My brother was next with cancer. He died at age 46. I took care of him and worked a full time job. My daddy was also sick and I took care of him at the same time. He died two years after my brother. Can you imagine being alone at age 35? I was and still am. You would think it would get easier as time passed, but it doesn't. You see they, too, to part of me with them when they left this earth. Today I feel like 1/3rd of a person.

Christmas is in a few weeks. The world has created a holiday designed for families. In all honesty it is about the birth of Jesus. How can you focus on the true meaning when you're hit by "family holiday" at every event during this season? Even the movies on tv are focused on family. Just hold my breath and make it through. Enduring. Wishing I could sleep for a week.

Sitting in the dark with hope of light from the maker of this world. Empty me out, Lord, and fill me with your Spirit.

Saturday, November 28, 2015

Wishing for Christmas

Most people make Christmas wish lists. This year I had a difficult time just putting up a tree.

If I had a choice for wishes, they would be as follows:

1.  Not to have to live through another Christmas alone!

2. This one is a two part: Money to pay off the existing Benlysta bill and not have the $1000 hanging over my head.

3.  I just want to go home where I can get the medical care I need.

4.  Be needed by someone. People take this for granted. Being needed isn't a burden. It is a joy.

5.  My kindle is dying. How I wish I had a 10 inch tablet so that I could see to read a book!


Silly what we wish for this time of year, isn't it?

Wednesday, November 25, 2015

Thanksgiving and Christmas

Thanksgiving in tomorrow. I am very thankful for so many things, but I still don't like the holiday. It focuses on the unity of families. No, I don't hate families either. I just don't have one anymore. My immediate family has passed away. Add to it the aunts, uncles, grandparents, etc., and you find someone who is alone in the world. I never found the right person, so I'm single.

I took a chance and went to a new church on Sunday. Normally I make a vow not to enter social gatherings because they make me feel even more alone. Thanksgiving was mentioned. Families mentioned. I was surrounded by families. How do I feel? ALONE. 

I would give anything to step back in time when I left the last day of Fall quarter from college and traveled home for Thanksgiving and Christmas. Nothing like the smell and taste of my mama's homemade cornbread dressing. She went all out during the holidays and was known as a top notch southern cook. 

I would give anything to arrive home, drop my bags, sit at the kitchen table and eat supper with my family. Wake up Thanksgiving morning to the smells of heaven, and sleep the rest of the day in a deep security, something I've not felt since the last one died. 

I simply hate the holidays now. Most of the time I can handle Thanksgiving, but Christmas is unbearable. Sometimes I'd like to crawl in bed and hibernate for another month. A coma wouldn't be such a bad thing this time of year. 

I barely remember past holidays. Bits and pieces come to mind. 

Appreciate the family you have. The alternative is not good.

Sponsor a Wreath

I heard a report on the news today where Wreaths Across America are short 300,000 wreaths this year. They put wreaths on service men's graves every Christmas. Cost is only $15 a wreath.

Great way to remember someone who served. My daddy served four years in WW11 via the army. 

Please consider helping them: 

wreathsacrossamerica.org


Thursday, November 19, 2015

At Times Like These

It has been a horrible week personally. I started throwing up and then a lupus flare hit. Thank you yo yo weather! I've barely been able to function long enough to have a clear thought. My body is wracked with pain and fevers are coming on hard. Such is the joy of having lupus.

This week has also been hard because of the attacks occurring around the world. So many people are afraid. And when the government says "Nothing to worry about. Don't be afraid. We will take care of you," it is then we should worry. We live in a time when lawlessness is rampant. It starts with the office of President (not enforcing laws) and spreading like wildfire across the nation. If the highest office won't enforce immigration laws, refuses to defend our borders, can't see the truth if it bit him in the face, what hope do we have to keep out ISIS? The border is wide open. He welcomes immigrants who are not vetted as he says. It only takes one woman, man or child to cross over and blow up a group of people. This is enough to be afraid of.

I didn't wait for calamity to happen before I sought refuge in God. It is written in His word for us not to be afraid. Written 365 times. When I feel anxious or fear creeps in, I remind myself these things come from Satan. I repeat verses from God telling me to not be afraid. He is here. I am safe with Him. Of this I have no doubt.


JOHN 8:12
Then spake Jesus again unto them, saying, "I am the light of the world: he that followeth me shall not walk in darkness, but shall have the light of life."

JOHN 12:46
"I am come a light into the world, that whosoever believeth on me should not abide in darkness."

1 CORINTHIANS 15:3-8
For I delivered unto you first of all that which I also received, how that Christ died for our sins according to the scriptures; and that he was buried, and that he rose again the third day according to the scriptures: and that he was seen of Cephas, then of the twelve: After that, he was seen of above five hundred brethren at once; of whom the greater part remain unto this present, but some are fallen asleep. After that, he was seen of James; then of all the apostles. And last of all he was seen of me also, as of one born out of due time.


 
PHILIPPIANS 2:5-11
Let this mind be in you, which was also in Christ Jesus: who, being in the form of God, thought it not robbery to be equal with God: but made himself of no reputation, and took upon him the form of a servant, and was made in the likeness of men: and being found in fashion as a man, he humbled himself, and became obedient unto death, even the death of the cross. Wherefore God also hath highly exalted him, and given him a name which is above every name: that at the name of Jesus every knee should bow, of [things] in heaven, and [things] in earth, and [things] under the earth; and [that] every tongue should confess that Jesus Christ [is] Lord, to the glory of God the Father.

JOHN 5:21-30
"For as the Father raiseth up the dead, and quickeneth [them]; even so the Son quickeneth whom he will. For the Father judgeth no man, but hath committed all judgment unto the Son: that all [men] should honour the Son, even as they honour the Father. He that honoureth not the Son honoureth not the Father which hath sent him. Verily, verily, I say unto you, He that heareth my word, and believeth on him that sent me, hath everlasting life, and shall not come into condemnation; but is passed from death unto life. Verily, verily, I say unto you, The hour is coming, and now is, when the dead shall hear the voice of the Son of God: and they that hear shall live. For as the Father hath life in himself; so hath he given to the Son to have life in himself; and hath given him authority to execute judgment also, because he is the Son of man. Marvel not at this: for the hour is coming, in the which all that are in the graves shall hear his voice, and shall come forth; they that have done good, unto the resurrection of life; and they that have done evil, unto the resurrection of damnation. I can of mine own self do nothing: as I hear, I judge: and my judgment is just; because I seek not mine own will, but the will of the Father which hath sent me."

Proverbs 19:23


23  The fear of the Lord lleads to life,
and whoever has it rests msatisfied;
he will nnot be visited by harm. 

 Proverbs 14:26

26  In the fear of the Lord one has mstrong confidence,
and nhis children will have oa refuge. 

Matthew 10:31
31 Fear not, therefore; nyou are of more value than many sparrows.
Psalm 56:11
11  in God I trust; uI shall not be afraid.
What can man do to me?
1 Peter 3:14
14But even if you should suffer for the sake of righteousness, you are blessed. AND DO NOT FEAR THEIR INTIMIDATION, AND DO NOT BE TROUBLED, 15but sanctify Christ as Lord in your hearts, always being ready to make a defense to everyone who asks you to give an account for the hope that is in you, yet with gentleness and reverence;…

DO NOT FEAR:

http://www.gotquestions.org/Bible-fear.html



Don't forget!

The busy season is starting up for Thanksgiving and Christmas. Already I can see houses with Christmas lights up. By this time next week Christmas trees will go up in homes.

While you're sitting with your families this Thanksgiving and Christmas, please remember there are those of us who don't have families. Remember your neighbor next door, the man or woman down the street, etc., for they may not have anywhere to go. For some of us, it is the hardest time of the year.

I can tolerate Thanksgiving, but Christmas is extremely hard for me. There are so many people alone at the holidays. Remember them and make a difference.

Friday, November 6, 2015

Time Keeps Passing

Time keeps passing and I still haven't decided on a new rheumatologist. I've been so burned by bad doctor experiences in KY that I just don't want to try anymore. I know I won't be able to get the necessary medication that treats systemic lupus without one. Sometimes I wonder if it is even worth the fight anymore.

It has been a crazy weather roller coaster here. Yes, it has taken its toll on my body and mind. Below freezing one week and 70's the next. Today the rain is back and with it comes another nose dive in temperatures. This type of weather releases extreme pain throughout my body. I call it suffering because it is unbearable. It also puts my thinking into a dull mode. I can't remember one hour from the next. Last night I set out a bowl of food for Buddy, the leftover food Rascal and Bitty did not eat. I know there was a dry food bowl out there as well. Before I went to bed, I checked to see if Buddy showed up and was sleeping in his box on the porch. Instead I found dry food scattered everywhere and no bowls. I found bowls in my sink obviously used for the canned. When did I take those bowls in? I wouldn't be surprised to find the other bowl (of dry food) had been stolen by a local dog or the two raccoons who raid my porch. Never found that bowl.

Two days ago I was going to make an egg sandwich. I cracked the egg, stirred it up, pulled out a diet coke to drink as well and instead of pouring the diet coke in a glass, I poured it in the egg. Stupid!

I'm losing days. Can't remember one from the next. I'm not talking about dates, I'm talking about days. Scaring me silly. Being alone I wonder what will happen to me if I end up with dementia, my mother had this and lupus patients tend to get it as well.


Top it all off with the fact Thanksgiving is in a few weeks. I hate the holidays. It is a time for family. When you have no family, your empty feeling turns into an unbearable void. I can deal with being alone at Thanksgiving. I can't seem to master that at Christmas. It is heart wrenching.

If someone asked me what I wanted for Christmas, my list would be much different from most. First, I would like to have food in my pantry. There are more spider webs than food in there. My fridge is also empty. It is so hard choosing between medications and food. Too, I'm still paying off the Benlysta. $1000 more to go.

Another  wish I would add is to go home. I realized people here are no different than those in Alabama. And even though crime is higher, I was able to get medical care far better there than here. My health is steadily declining and soon I won't be able to function. The things I cannot do are outnumbering the things I can do. I simply need to go back for medical reasons. Problem? Cost of a move. Uhaul, gas, new apartment in Dothan, set up of services, etc. It costs money and a lot of it just to move. I don't have any.

I'm feeling down today. Could be the pain, dull thinking, worry about all of the above. I'm exhausted. Can't sleep through the night and know this isn't helping my lupus flares. My rheumatologist from Dothan ( the one I had for 18 years), told me to be sure and sleep 8-10 hours a night. Less than that would cause lupus flares. He was so right. I miss his care. He went out of his way to make sure his patients had their medication, sought out programs to help with medicine and medical costs. Made a huge difference. You don't miss something good until it is gone. I haven't found one caring compassionate doctor here yet.

Life is hard enough just getting around day to day. Add in all of the above and tell me if you could stand it.


Friday, October 23, 2015

What a Week!

What a week! It seems that anything and everything happened. If it is going to happen, it will happen to me.

Early this morning while returning from the bathroom, I rammed my left foot into a wooden stool. Swollen and bruised, it felt broken on one side. Was able to slide on a sandal today. Glad it wasn't cold (even though I wish it were cooler).

My internet went out three days ago. I never realized how much I depend on the outside contact from the net. Every day I called to check on what was going on. First was given the message that they upgraded their system and an outage occurred. Fine. Next day same story but would be on by 7:00 p.m. Next day same story. I called and asked for a credit for the days I was without service. I also called Time Warner to switch to them. No excuse, Windstream. I'll be saving around $25. Good comes out of a bad situation. 

Then my regular doctor's appointment in Wilmore. Informed him about my rheumatologist experience. Next thing I know they send in a nurse to be my go between with the rheumatologist. She called her, they called me, she called me back. Keep in mind I never asked for any of it.

I was told I HAD to have a rheumatologist due to the nature of my systemic lupus. Fine, I told them to find me another one. They encouraged me to keep the one I had - the one who dismissed me because she didn't think she could do any better for me. Who would trust a doctor like this?!?!

So today I started searching online for another rheumatologist. The other doctor's office said they would be glad to refer me to another one once I found them. I have never ever experienced such things! My doctors back in Alabama would send me to other doctors, but they called and scheduled the appointment. Here I've had to do all the work. Ridiculous.

So it has been stressful and this evening a flare showed up. Fever started spiking. My joints were so swollen I could barely hold a glass or walk across the floor. Headaches so bad I couldn't even rest my head on the pillow.

Some days I wish I could wake up at home, in the country, smelling my mama's cooking, feeling the ahhhh you can only feel when you walk inside the door of your home. I miss it. I miss them.


Thursday, October 15, 2015

Fall Ya'll

So glad the temperature has caught up with the month. Nothing better than the cool air. So crisp and clean. Personally hope this is the end of the flea season as summer has been horrible with fleas. I've had to buy flea pills and other treatments to get rid of them. They are expensive and I've had to choose between flea pills and my meds. So if I had a Christmas wish this year, it would be for a big supply of Capstar flea pills for cats. My little escapee ran outside three times this summer and brought in the bugs. I've sprayed the carpet, vacuumed every day, and still fighting these buggers. I gave the last capstar pill to her this morning and she's going nuts with the fleas biting. Will they ever end????

Added to the list of questions I have to ask God when I get to Heaven: What was the purpose of a flea?!?!

Last week was the week of bad things happening. One of the worst was when I picked up Rascal to move him and he stuck his claws in my face. Missed my eye by 14th of an inch. Doctored it at home and the swelling it going down.



Quite frankly some days I'd rather just stay in bed with the covers over my head.  Somedays it would be best.

With the drop in temperatures comes the pain. Went for a blood test yesterday. I could barely hold my cane. My wrist.feels broken even though it is not. Breathing issues have set in with the colder air. I dread this winter.

Saturday, October 10, 2015

Time for Truth

I just spent time on a website defending my beliefs as a Christian. Majority of those who tried to devour me were atheists. I learned two important lessons today: 1. "Fools are fools and you can't argue with them. A fool takes no pleasure in understanding, but only in expressing his opinion." Proverbs 18:2.
Proverbs 1:7 says, "The fear of the Lord is the beginning of knowledge; fools despise wisdom and instruction." Proverbs 17:28 says, "Even a fool who keeps silent is considered wise; when he closes his lips, he is deemed intelligent." Proverbs 23:9 says, "Do not speak in the hearing of a fool, for he will despise the good sense of your words."  There are more at this link if you want to read them:

http://www.openbible.info/topics/fool


I realized I was a fool for putting up with their anger and condemnation. I am amazed at how stupid some comments can be. So I stated the truth and left.  I also left with several new names for my prayer list.

2. God can take any situation and turn it around. Romans 8:28 says, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." He can sift through the muck and make truth shine bright in a dark world. I'm thankful He does this for me every day. I may be a broken vessel, but light shines through the cracks!

Before you say, "This is a blog about lupus, not God," let me remind you of something. THIS IS MY BLOG. I can say and share anything I want on here. My life belongs to Him. I could not get through a day without His mercy, grace, and love. 

After spending time "listening" to so many who are living under lies, I decided this entry would be one of truth. 

16"For God so loved the world, that He gave His only begotten Son, that whoever believes in Him shall not perish, but have eternal life. 17"For God did not send the Son into the world to judge the world, but that the world might be saved through Him.… John 3:16:17

Here are more truths on salvation:

 http://www.openbible.info/topics/salvation

God gives you choices. We make them every day. One of the most important choices is to accept Jesus as savior or walk away. Every choice has consequences. You have to make that decision for no one else can do it for you. He gave a most precious gift. 

"“I am the Alpha and the Omega,” says the Lord God, “who is and who was and who is to come, the Almighty.”Rev. 1:8.  "Thus says the Lord, the King of Israel and his Redeemer, the Lord of hosts: “I am the first and I am the last; besides me there is no god." Isaiah 44:6.

More here:

http://www.openbible.info/topics/god


He is real. He is living. This world is soon to realize how true this is. Read Revelations and Daniel.

“Enter by the narrow gate. For the gate is wide and the way is easy that leads to destruction, and those who enter by it are many. For the gate is narrow and the way is hard that leads to life, and those who find it are few.  Matthew 7:13-14

I learned that this world is filled with proverbial fools simply by the definition held there. By sharing my beliefs, straight from God's word, I was condemned as a name caller, a child who believed fairy tales, etc. etc. etc. The fact remains that I know who God is, I believe in His word and will praise Him always. I know where I am going. Do you?

Since the beginning of the world and creation of man, this world has been part of a war between God and Satan. We fight it every day. I will simply never understand how someone can turn to evil. I have read the final chapter and he loses and drags with him a great number of mankind. "In their case the god of this world has blinded the minds of the unbelievers, to keep them from seeing the light of the gospel of the glory of Christ, who is the image of God." 2 Corinthians 4:4. Satan is a liar. I don't know about you, but I plan on following the truth. 

Praise God for His mercy, grace and love! 

-------------------------------------------

The cross has been on top of the water tower (which sits on Asbury University campus -  a Christian campus) since 1976. I always found peace as a student as it reminded me WHO was in charge. I knew I was "home." I love this school and what it stands for. If you take down the cross, it won't make a difference in the faith of Christians. So why are people so angry? Another attack by the liar of all liars.

http://www.miseeharris.com/wilmore-kentucky-mayor-challenged-to-remove-cross-from-water-tower-trending-news/








Tuesday, October 6, 2015

Just Wishing

Today I want to go home. Miracle where are you?

Tuesday, September 29, 2015

Rain

Put the window fan in the window tonight. Smells like rain in here. Nice cool breeze coming in. Smells like memories of childhood. Running through the rain and getting soaked to the skin. Good memories of puddle jumping with my fried, Amy, I'd DEcember in KY at Asbury College. Playing and running - something I can no longer do. Today I could barely walk from room to room while using a cane

But for a brief moment I sit up in bed enjoying the sweet smell of rain and cuddling up with good memories Won't have long before the rain turns to snow and bitter cold.  Then the air will reshape and flea, a threat to someone who suffers from lung damage due to lupus. Until the day comes when I can no longer breath, May I go out with the sweet memory of sweet rain and sharp cold clean air running through the last breath I take before I go home to Heaven.

Sunday, September 27, 2015

SOME THOUGHTS FOR YOU TO PONDER

Knowledge is knowing a fact. Wisdom is knowing what to do with that fact. It is a path that leads to peace.

If you are not a loving person, you do not know the God of the Bible.


Peace is not placidity or positive thinking. The peace of God is first and foremost peace with God.

The God of the Bible is the only true God. Without Him you can do nothing.

Knowing God and knowing about Him are two different things.

You can have what you want , but you may not want what you get. And if what you want is not what God says is proper, you will pay a price for it.

What you believe has nothing to do with reality. Poison kills whether you believe it does or not. 

There is a high cost to low living.

Dreary Dreary Dreary!!

The weather finally produced some rain.  News says we're mid drought in KY. Thankful for the rain, but anyone with systemic lupus knows it causes severe pain throughout the body. 

When I woke up Saturday morning, my entire body was writhing in pain. A friend laughs when I tell her even my hair hurts, but it is true. When you're in extreme pain it hurts to even run a brush through your hair. When someone tries to hug you, the pain is worse.

I was reminded how hard living in KY is for someone who suffers physically. The cold and wet beat the body from inside out. I have to find a way to go back south. I dread this winter more than any. I've fallen several times over the past few months and know the widespread pain hits where the falls did damage. 

I didn't sleep well last night because of pain. It hurts to sit, to lie down, and to stand. So I rotate between the three. You don't get much relief when you can't sleep or rest. 

Saw a play at the college last night. Sitting there in extreme pain did not help. Although the play was wonderful, I was in tears from the pain. None of the pain medications seem to be working. 

The worst part of being so sick is feeling like you're alone. If you are with a group or just a few people and they don't relate, it feels even more painful. I'm no different than anyone else. I simply want to be loved and cared about. When I am suffering it feels like people would rather hang you on a hook somewhere and come back after their fun is over. Weighing them down or getting in the way is no fun. 

I'm sick. I'm suffering. I wish I could unzip my body and crawl out. Winter hasn't even started yet and I don't know if I'll make it through this one. 



Wednesday, September 23, 2015

Fall Weather

Today is the first day of Fall. Still feels like summer. Will be so glad to feel a cooler flow of air come in. There is hope! 

I don't know if it is the subtle change in weather or just another flare, but I'm so wiped out these days. Feel like a wrung out rag. Extreme fatigue is part of suffering from systemic lupus and I've had my share of days with no strength to function. This week is another one with no strength. 


With sleep it is feast or famine. I've had more days with insomnia, too. But the past couple of nights I've been blessed with sound sleep. I'm so thankful for those nights. 

I tend to wake up at 3:00 a.m. It is then I go outside and feed Buddy, my porch kitty. He's always on the porch waiting. Early Tuesday morning I followed the same routine. But this time when I walked outside I witnessed screams in the building next door. Shortly thereafter a vehicle tore out of the drive and flew down the street. About ten minutes later there were several police walking up to the doorstep of the apartment. Funny thing was they parked at the end of the block and walked. Then an ambulance parked behind them and wheeled a gurney down the street. Is this a new way to protect them? Was the issue that serious? 

I kept telling myself, "Okay. This is Wilmore. Things like this don't happen here." 

About an hour later, they were all gone and life settled down again. Sweet little Buddy never moved. He felt safe where he was. 

And unless someone reports incidents in the paper or news, I'll never find out what happened. Nothing reported. Just enough to raise your blood pressure! My stress level peaked and wiped me out. 

How I want to accomplish something this week. Whether to clean a room or sort out old boxes, I wish I could accomplish something. 

I'm still without a rheumatologist and for now I've decided to not replace her. I've just had enough with poor health care and bad doctors. I need a break. If that means I can't get my medications, so be it. 

It is the end of the month and I'm stretching pennies again just to make it. Found out today Social Security will not be giving any kind of COLA raise. Even though the cost of living has soared, we'll have to make it on the pennies we get. Everything has gone up including my medication. I'll be back to choosing meds or food once again. 

Wish the government folks would live on the smidgen of money we get. The amount would change in a hurry!

Time to close and head to bed early. I just can't keep my eyes open. It is only 6:30 p.m. I'm glad I was able to sit up today. Tomorrow is flu shot day. I'm making a point to get one because my lungs are so affected by this disease. Last Winter was so very hard on my breathing. The last thing I need is to add the flu to the mix. I don't look forward to cold weather and the suffering it brings. 


Sunday, September 13, 2015

A Random Thought

I hope it won't become a random thought to those who read it. I saw this quote the other day, "A friend to all is not a friend to one." I know several people who seem to believe the more friends they have, the better they are. A friend to all is not a friend to one. If you spread yourself thin, hit the high points with people in your life, what good is it? Wouldn't it be better to be a true friend to one?

I lost several friends when I was diagnosed with systemic lupus. As my health condition worsened, I lost more. I learned that if you're not usable by the church, no one reaches out to you (personal experience). I learned that people don't reach past their own family most of the time. What happens to those of us who have no one?

Heaven forbid I am not a friend to one. Forgive me if I ever use someone because I don't want to be alone. Life is hard enough.

If I leave this life knowing I had one true friend instead of a crowd posing as friends, I'll be a rich person.

Sometimes finding yourself in these positions teach you how to be a better person.

Friday, September 4, 2015

Sometimes.....

Sometimes I wish people would listen and hear me.

A friend said she hopes I can find a way to get back to AL. She wants me to be happy where ever I go.

That's not the purpose of getting back to AL. The purpose is finding proper health care for the multitude of health issues I suffer with.

Since I moved to KY, I have gone through two rheumatologist, two MD's, two thoracic surgeons, and a horrible eye exam place. For the past year (or two), I have gone from being somewhat covered with medical doctors to one doctor - an MD.

I have a thoracic aneurysm growing underneath my heart. It was almost to 5.0 cm two years ago. The systemic lupus I've suffered with for twenty years has caused me more flares than I can count. Damage is unrepairable. My vision has worsened so much that I have to use glasses and a magnifying glass to read anything. The plaquenil I take for lupus requires a check up from an ophthalmologist to see if the medicine is causing more vision lost because of the deposit on the back of the retina. I have pre-glaucoma. The last time it was checked was almost two years ago. The doctor and his assistant treated me like I was one of the cattle that run through the massive office there.

The permanent nerve damage in my legs and feet has spread to the top of my hip making it difficult for me to walk or balance. I've fallen three times in six weeks, the last one being last Sunday. I fell off the porch trying to pick up the cat. Late at night so no one was there. I dragged myself to the porch and finally picked myself up.

I'm tired of going through bad doctor after bad doctor. I need stability where medical care is concerned. I don't have it here. Had I known then about KY's poor care, I would have stayed put.
 I had hopes, such high hopes, and they were dashed quickly.

I need to return back to AL for medical care. Nothing more. But am stuck because I can't afford a move and have no one to help me.

I think about so many people in this world who are suffering from far worse than I am. They cry for help, but people ignore them. They suffer. What has happened to this world??? 

Another friend posted on his facebook about an experience he had with a man who was asking for money for food. Since the man didn't leave and go get food immediately he decided the man was not in need. No one knows what is going on with another's life. You're not present in a person's life 24/7 and don't know what has gone on. If you have extra, help someone. What they do with it then is between them and God.

I heard someone say this yesterday, "Don't just say, 'Let me know if you need anything.' See the need yourself and do something about it." Too many times people use "I'll pray for you" as a get out of jail free card to avoid any action at all.  I think it is just as bad to know someone needs help and not to do anything about it.

Today I feel like screaming to the top of my lungs. But then I realize the stress would just cause another lupus flare (on top of the one I've suffered all week) and just make it worse. Besides, no one is listening.

Tuesday, September 1, 2015

People are Unbelievable

Never ever go to lex18.com to post an opinion. You will be swallowed with negative bullies. I posted an encouragement to someone from an article I read. Immediately I was bombarded by fools. Instead of taking it, I stood my ground. I believe this world has become too complacent. Too many Christians have become the silent majority not standing up for anything. So I did.

The ignorant people I could overlook, but the Christians who bombarded me with Bible verses were unforgivable. Another reason why I can't stand organized religion. I'm a Christian, believe in God's word, believe in Him. I don't need bullies from both sides of the aisle to bombard me.

Today I learned two things:

1. Adults are worse bullies than children. I can see where their kids get it. Get a clue - you lead by example.

2. If you don't agree with someone, they will stomp you in the ground.

This world is filled with so much bad in it. Today I met a great number of people who live that bad. Explains a lot. Sad thing is no matter what you say, they don't want to hear the truth.

All of it started with "Keep on! Stand by what you believe in!"

How ridiculous!

Sunday, August 30, 2015

What NOT To Say to a Lupus Patient

I'm down to one doctor now, but not by choice. On Thursday I went to my rheumatologist. The nurse said I looked like a truck ran over me. She wasn't far from the truth. I felt like one ran over me! It had been a hard week, a hard month. I'd fallen twice, couldn't sleep from pain, and that made the pain worse. I was swollen all over, especially my feet. I was one sick puppy. She said my blood pressure was 110/60 so it was good. For me, that is low, a bit too low. I knew then it was showing up. 

I was glad this had hit Thursday. The doctor would see how sick I was. She was also planning to run blood tests that day so I prepared ahead of time. My system was empty and ready to go. 

When she came in, she said, "Don't take this the wrong way, but I don't seem to be doing much good for you. I think you should see another doctor."

I was so stunned that it took me awhile to make sure I heard her correctly. No other doctor ever said that to me before. One came close. He sent me to a rheumatologist when he suspected lupus because he just had a lupus patient die and didn't think he could go through it again. Best thing he ever did. At least he had a reason. 

I ran through my memories to double check how my behavior has been in her presence. I was respectful, followed her orders, participated in treatment. I was never ever rude to her even though it was the most disorganized office I ever had to deal with. 

So I told her this, "I don't expect you to heal me. I know this is the nature of the beast. I also know there is no cure and you can only treat the symptoms. I've suffered from this for twenty years and accepted the truth a long time ago. What am I suppose to do for the medications only a rheumatologist can give me?

"Well," she said, "That is up to you. I don't really have another doctor to refer you to." 

And that was basically it. First I know if a sentence begins, "Don't take this wrong" it was meant to be wrong. Second a doctor isn't suppose to behave this way and I never gave her cause to do this. 

Thinking back I realized she only did one urine test in the two years I saw her. It is extremely important to check the kidneys of a lupus patient, especially one who has had the disease as long as I have.

I walked out of that office suffering in the same pain I walked in with and blaming myself for what she did.

Two days later I began to wonder if this was something she was doing for herself. Was she tired of the red tape of Medicare? Was she quitting being a doctor? Was she moving? Does she think if she can't cure you, it isn't worth her time?  If any of the above was true, she should have told me so and not let me beat myself up for what she did. It had to be something personal on her part. After all doctors these days take everything personal. 

The medication will last three months because that is all doctors write them for now. After that I'm without medication for lupus. I know the medication has kept me alive over my allotted time (I was given ten years on diagnosis). Without it, I'll go down and I know this. I'm tired of going through doctors like water flows down a waterfall. I'm done.

I don't have a thoracic surgeon either. Nor an opthamologist to keep check on my vision and plaquenil tests. The rheumatologist never referred me to anyone, but expected me to find someone on my own. Never ever had doctors do this before.

The thoracic surgeon I found when I moved here was gold. He was kind, compassionate, caring, educated. Then he moved to Princeton to be a professor. He was replaced with a man who spent five minutes in a room with me, glanced at the cat scan and said see him in a year. Did not bother to find out any history or background. Acted like he didn't want to waste his time. When a year passed, his office never called to schedule another cat scan. December marks two years since the aneurysm near my heart has been checked. 

I am down to a basic MD. He knows only what the chart shows. Asks me the same personal questions every time I go in. Do I have family to check on me? Do I live alone? Etc. After a year and a half you'd think he'd get a clue. 

If you are a doctor and are reading this, don't treat your patients like this. They are human beings with feelings, suffering or they wouldn't be seeing you in the first place. No one expects you to be God. There is only one God and you're not it. Stop acting like you are. 

All I know is this: if I don't find a way back to Dothan where I can acquire proper medical care,  I won't be on this earth much longer. The problem is and always has been one thing: the cost of a move is more than I can afford and I don't have anywhere to go. If you know of a solution to this problem, please let me know! At this point I need a full fledged miracle!

Sunday, August 23, 2015

Touch of Fall

Two days ago we had a touch of Fall weather. It was in the 50's at night and 70's during the day. Oh so nice. The heat has returned and today I feel miserable. My doctor's appointment is Thursday. Have a list of problems to share with her. I never expect much when I go to the rheumatologist here. I think she's like the rest - record keepers.

It is almost the end of August - thank you, Lord, for getting me through the worst of the heat!! Thank you for the taste and promise of cooler weather ahead. So looking forward to getting rid of summer!

It has been a long month and as usual I've got too much month and not enough money left for food. Either I don't have enough cat food or people food and this month it hit on both! Today I prayed for food. God has always taken care of me and know He won't let me down. Just keep reminding myself, "Do Not Be Afraid!

Thank you, Lord, for caring for us!


Monday, August 17, 2015

Summer is Still Here

Yes, it is still summer! I've never been a fan of heat and humidity even though I grew up in Southeast Alabama. With a chronic illness, heat and humidity are unbearable! Weather goes up and down with barometric pressure going up and down. Feels like I'm being squeezed in a vice! My right foot was so swollen last night I could almost feel the bone inside of it breaking (felt like it was breaking). Pain in my left shoulder, down the back of my neck, swelling all over my body. Oh gosh has it been a miserable summer for me!

I keep my eye on the calendar. Fall is coming. Humidity will lessen. Temperatures will drop. I look forward to the day I can put my electric mattress pad and electric blanket on the bed at the same time. It makes sense that heat helps relieve the pain, but in the summer you can't stand the heat. I've kicked my sheet off too many times at night from sweating.

It has been a blah day here. Rain is trying to set in and it has been uncomfortable. So has trying to sleep. Just wish I were normal and could sleep every night the entire night through. But I can't seem to do it. This morning I woke up at 3:30 a.m., fed Buddy outside and went back to bed. It was 10:00 a.m. before I fell asleep again only to sleep for an hour. It adds up over time. With a chronic illness like lupus, you're suppose to get at least 8-10 hours of sleep a night just to function at all. No wonder I've been so sick this summer.

Winter predictions are the same as last year - heavy snow and cold cold cold! I developed a lung problem last winter and suffered greatly from the cold. I don't think my poor body can go through another winter like this in KY. Can't breathe. Can't get out of bed. Can't do normal every day things. I have to find a way to get back to S.E. Alabama and a place to call home again. The cold is killing me, literally.

I'm getting ahead of myself again. One day at a time. One day at a time. Worrying about tomorrow will not help today.

When the cold nights set in late September, I'll put the mattress pad and electric blanket on the bed. My kitties will curl up at the foot and we will do the best we can. I look forward to turning off the fan and curling up in comfort. 

Saturday, August 15, 2015

Random Thoughts

It has been a difficult week around here. If it was meant to go wrong, it did. I had to deal with customer service for several different reasons in several different circumstances. All of it bad. 

And I fell again. Stood up from bed and fell into a chair by the bedroom door. The arm of the chair stabbed me in the abdomen. That makes two falls in two weeks. My balance is getting worse. Thanks a lot, systemic lupus!

I've been inside all week except when I took the trash can to the end of the driveway. It has been a lonely week.

I once told a friend, "I have no life." She laughed. She's known me for three years now and should know it wasn't meant to be funny. It is a fact. I have no life. Most of the time I can handle it. Some days I can't. It is overwhelming when you're sick and can't go anywhere or do anything fun. Seems like the only things I do anymore is go to the doctor and once a month to the grocery store. Wheeee!!!!

This is a personal blog filled with personal experiences so I have to use "I" and "me" a great deal to get the point across. In a group of people or one on one, I'd rather be talking about what's going on in the world or other places and things. Not interested in gossip. Not interested in listening to someone spend an hour talking about themselves. That gets old fast. 

Being a hermit isn't such a bad idea now is it? Some days I'd rather be alone with my kitties than go out with people and listen to them talk nonstop about themselves. I never say much because it just isn't worth it. No one asks how my week has gone or what I'd like to do. They just blather on about themselves. 

Being a listener isn't a bad thing either except when people take advantage of it. I've encountered more people in KY than any other place who want me to sit and listen to them talk. When someone needs someone to listen, I don't mind one bit. If they want my advice, I'll give it. Otherwise I tend to tune out the "I ME" conversation. When did this world become so obsessed with themselves? 

I know it sounds bad to say all of these things, but I'm on the edge today. I've had enough of rude people and self centered talkers. My mother's baby sister was a self promoted talker. When she called our house, most of us ran the other way. We knew we'd be on the other end saying, "Uhu" never getting a word in edge wise. 

I say this in hopes someone will take note of how they come across. Most people don't mean to be selfish and some do. When it all comes to a head, that's when I bail. Just can't stand it. Add it on to a week of illness, lack of sleep, severe pain, fevers, and you'll understand how it can build to a head in no time. Noticed my patience is getting thin these days. 

So when you're in a conversation with someone else, try asking how they are doing and truly listen. You may be the only person they come in contact with that day. They don't need your self entertainment. They just need someone to care. I know I do. 

Since I cannot drive (due to this stupid illness), I'm pretty much stuck. Tonight if I could, I would have jumped in the car, put the kitties inside and drove until I ran out of gas. Some days I'd like to just disappear off the face of the earth. Hate feeling that way. Trapped and nowhere to go. It scares me sometimes. I wonder how much longer I can stand it. 

To sum it up, I'm sick. I'm in pain from a fall. I haven't slept much due to flares. I'm tired of fevers and swelling pain. I need someone to listen to me as much as others do. And I feel alone in the world. 


So what do I do? I watch Kevin Spacey and smile. Poor Kevin!

https://www.facebook.com/video.php?v=10153561069468896&pnref=story


Monday, August 10, 2015

Sometimes

Sometimes I wish I had a normal body, a normal life, a normal schedule. But I don't. My body is sick and broken. Things others take for granted, I'm thankful for like sleep. This horrible disease has stolen what this world calls a normal schedule, a normal life.

So when your life becomes "abnormal" according to the world, you have to see yourself in a different light.

What is normal? Who sets those standards? Every person's life is different and the struggles they face in life are different as well. Life is hard. Add illness to it and it becomes harder.

So why do some people enjoy making other's lives so much harder? I wish someone would explain it to me. Don't they know gossip destroys a person's opportunities? If someone hates themselves so badly, why do they have to step on others to make themselves feel good?

Gossip does so much damage. The guilty gossiper goes on about her/his life without a thought to what they said, how much damage it did, and simply does not care. They leave behind them destruction that is beyond repair.

Be careful who you trust. A listening ear comes with a loose tongue. I wish I had learned this lesson early in life, but I've been the object of destruction from a lying, loose tongue. Now I don't say much. Not worth the chance it takes to trust again.

I'd rather be around animals! God's innocent creatures.

Another thing that bugs me is self centered people. You can spot them easily. They're the ones who talk about themselves over and over and over again. I had an aunt like that. Every time she called the house, we'd all run away from the phone. Wish all people would stop thinking of themselves as God's greatest creation and look beyond to those who are around them. Many people struggle every day, but some people are so wrapped up in their own selves they can't see it. What a lost opportunity.

The church is full of this type of people. Entertain me. Listen to me. Find me a spot. Me, me, me, me! I'm so sick of that word. It is filled with people who are so consumed by themselves they don't recognize the pain in lives outside of the building. Don't get me started on "Me" sermons. You can lock yourself in today's church and be just fine. Problem is the place of the church is to train Christians to go out in the world and preach, teach and live the Gospel. I can say I haven't experienced the latter in a long time.

Sometimes I wish people were more kind and caring like they use to be. I long for a time when neighbors checked on each other, when people went to church to worship God and not get entertained or become a place of habit. Whatever happened to people caring about others?

This world is becoming a dangerous place to live, more so each day. If there are no people who care about their neighbors, to take action, to literally live their faith, what will happen to those who are alone, vulnerable, and weak?

Sometimes I wish......but then I realize wishing is a waste of time. So I pray God will open the eyes of those who sit complacently by and do nothing. 

Saturday, August 8, 2015

Ouch Ouch Ouch!!!

No sleep. Severe headache. Hurting body! It has been a rough night and rough day today. I slept two hours.

Common problem with sytemic lupus patients. Insomnia. Headache. PAIN! But how on earth can you tell someone exactly how bad you feel and that you're so thankful to fall asleep on days like this? If they don't experience it, how can they understand?

When I finally found relief in sleep, my phone rang. Sometimes I hate to hear the sound of a phone ringing, especially when I hurt so badly. The ringing vibrates through my entire body. Of course, it was a telemarketer. Sometimes I just want to scream "STOP IT!"

While most people are so busy acquiring things to make themselves happy, I'd be very happy just to be pain free and rest a full eight hours. 

Friday, August 7, 2015

Just a Thought

August - finally! We're weeks away from summer coming to a close. Thank heavens! This summer has been a battering old fiend to my body. Rain, heat, humidity, drop in temp, start over again. And it has been the worst summer I've seen for fleas! My little girl ran out three times this summer and when I finally caught her, she brought in fleas. I've battled fleas on her, on Rascal and myself for months. Can't wait for the cold air to return and rid us of fleas, flies and mosquitoes.

For the record, Capstar flea pills have been my rescuer. They truly work. Problem is they are so expensive. If I could stock up on these I would do so.

I noticed something the other day. Anyone who knows me knows I've had a difficult time going back to church after working in one (or two). You see things and experience things that you just shouldn't. Either you truly find your faith in God or lose it because of the way people treat you. Thankfully my faith in God strengthened.

I have a hard time wanting to sit in a church service that is arranged for entertainment. Orchestras, repetitious songs shown on the big screen, no hymns, a sermon full of personal stories and jokes with only one mention of the Bible. I can now add one more thing that turns me off of today's church.

More and more people swarm to Bible studies only to spend that time with someone else's workbook or guide book instead of the Bible itself. There are many Christian authors in publication today and the church is turning its teaching to the guidebooks. It all boils down to this: the book is merely their opinions. Everyone has an opinion. These people are earning a living stating and explaining their opinions.

Personally I'd rather do my study straight from God's word. No opinions, no guidebooks, just Him. The living word is just that - living. Every time I read God's word, I learn something new. So why are we as a Christian nation relying so heavily on someone else's opinion?

It isn't for me. As for going to church, I see it as worshipping God. In song, in love, in His word. Simple enough. That is enough for me. Too much world in God's house of worship these days. Sad to say but I just don't feel welcome in what the world calls church when the world seems no different than the church itself.

Life is hard enough being on your own. If I didn't have my faith in God, knowing He is my salvation, my provider, my friend, I would have been lost a long time ago. Thank you, Lord, for loving me when no one else does. When my body has finally passed on, I hope those who truly know me will know I'm with the Lord God Almighty. 

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.