Sunday, December 27, 2009

Another Apartment Incident

I walked down to the office to mail four thank you cards last night. Tonight I walked down to mail another. When I arrived, the wooden slot had been torn from the wall and the two larger thank you cards I had sent were missing. I guess whomever broke into the box thought they had money inside. They didn't. They were going to two six year old boys. This place amazes me.

Another Trip to the ER & A NEAR Break In

What a wonderful way to spend Christmas! Yesterday I was hit by something hard. Was throwing up blood and passing blood through diahrea. After hours of this, I hit the floor and finally contacted Sandy to come help. When she arrived from Hartford, I couldn't walk to the door. Was too weak. So we called 911 for an ambulance.

They arrived quickly, but when asked which hospital I wanted to go to, they immediately said they would be happy to carry me to the car since I couldn't walk. Insisted if I went by ambulance I would have no guarantee of getting treated quickly at the ER. So they put me in a dining room chair and carried me to the car. Had I not been so sick, I would have been frightened.

Arrived at the ER by car. Checked in quickly. Triaged quickly and was sent back in the waiting room for an hour. Only three people in the waiting room. Had I gone by ambulance, I would have gone on back. They were NOT in any hurry to put me back either.

When I finally was placed in a room, it took forever for someone to come in. Luckily, I was given a good nurse last night. Doctor started off well. Wish x-ray and catscan techs would realize if you can't walk and if you're weak, you can't drag yourself from a bed to a table. Then I thought, "Hmmm, should have fallen off one of those tables and maybe I wouldn't have to worry about anything anymore."

Blood work showed high red blood count (very high dehydration) and high white blood count (very high infection). Combination lupus flare and stomach flu. Gave me pain meds and anti diarhea meds. Then at the end they did a stool smear. Actually, I had to do it because the nurse didn't want to.

Doctor never came back in. Nurse gave me test results. Now I could understand if the place was packed, but it wasn't. He was just walking around most of the time. Will Flowers ER ever become a real ER again?

The one thing that made me feel good was this. The women who want you to sign payment papers always come back when you're miserable and before you're treated. Last night I told her to come back after I received treatment and I'd sign her papers. She asked Sandy to sign and I told her no. Come back. Felt good to be in some control.

Sandy and I went to the store Wednesday night to get some ginger ale, soup and crackers. Came home to find my door jammed. She had to literally break it down, door frame and all. When we examined it, found out someone had tried to pry it open at the lock with what appeared to be a screw driver. In other words, someone tried to break in on me. She nailed the frame back in so that I could lock the door. I turned on the outside light that night, put a chair under the door and didn't sleep because I was afraid. You're so blessed to live in the country. What I wouldn't give to be able to sleep in secure peace.

The manager came the next day holding WD-40 saying sometimes these doors just stick. She examined it, too, and said "No, someone tried to pry open this lock. So she verified what we already knew.

Wednesday, December 23, 2009

A New Wise Lesson

I've learned something this Christmas. Sometimes it is best not to have family. Better to not have someone destroying your soul than being alone in peace. I've also learned your life touches another whether you want it to or not. Your choice how it does it: make a difference or causes damage. I'd rather make a difference. I've seen too much damage. I'm thankful, too, friends are the best family you could ever have.

Friday, December 11, 2009

All I NEED for Christmas

The only thing I need in my life is a house outside the circle of Dothan. Outside of town. A house....with no houses around. A quiet place. Lord, please send me a house.

Tuesday, December 8, 2009

Just another Day

Just another day. Rainy. Painful physically. Empty emotionally. Sometimes I feel as though God is punishing me by placing me in a four walled jail never to see another person. No family. No one. Holidays make it so much worse. The only time I don't feel so overwhelmed is when I'm asleep. I get up in the morning praying today will be a better day and by the end of it, I'm in tears. Lonely, painful tears.

Those with parents, those with friends, those with family of their own just don't understand what this is like. Sad thing is most don't care outside of their own world. I've experienced that in so many ways over the past few years.

I open the med pill dispenser for the day and ask myself "why bother?" No purpose. No one needs me. I have no life.

God get me through this horrible month. Give me strength not to give up and stop breathing.

Monday, November 30, 2009

Thinking about Youth

Have I reached the age where I've turned old? I wonder sometimes. I find myself giving advice to teens. GO TO SCHOOL! You'll have to work all of your life. You'll have plenty of time for marriage and kids. There's ALWAYS a way to go to school. I DID it without parents' help. You can, too.

I get back responses like "My boyfriend never wants to get married" which translates to "we're going to live together and have whatever kids pop up." Teens still believe it won't happen to them. They don't realize they CAN have better if they really want it. They just have to work for it because nothing is handed to you.

I've also encountered something else: teens who have to worry about whether they have a place to sleep at night, food to eat, a SAFE place. These are 17-18 year old teens. They should not have to worry about things like this. They should be enjoying life, enjoying their senior year in high school, planning for the future. Instead they are struggling because they have nowhere to go, no one to believe in them, no one to direct their steps.

There is nothing worse than having no one believe in you. There is nothing worse than being unloved. If you have someone who loves and believes in you, YOU CAN DO ANYTHING. Things don't matter. Look around and remember those teens you see.

Monday, November 23, 2009

Holidays

I just wish I had a family.

Saturday, November 21, 2009

Wish List for Christmas

No Holidays are not has happy for some. We wake up and no one is there. Go about our day and no one is there. When we go to the store and see people shopping, wishing others happy thanksgiving, just makes that empty and alone feeling even deeper.

People mean well. They bring you food. They invite you to their family gatherings. I appreciate the effort, but let me tell you that it just makes me miss my own family much more. I spend Thanksgiving in tears when I go to someone else's home.

You never get over the loss of your loved one, especially when you've lost so many people like I have. You just learn to live with it. At the holidays the loss is just magnified and the pain is deeper than you could ever imagine. When you lose a loved one, you join the club. You realize what the empty, sad feeling is all about during the holidays. Others don't understand until they have a loss close to them. I feel like my heart has an anchor pulling it to the bottom of the sea.

I use to make a wish list for Christmas and give it to my brother. He was the go to person for the holidays. Now there's no one to give my wish list to. So I write it here and hope he sees it. Unfortunately, my wish list has turned to a need list.

NEED LIST TO MY BROTHER IN HEAVEN

Okay, you funny brother, I'm doing it again! How I miss following this crazy tradition with you. I'd give you a list and you'd laugh. I'd get maybe one thing on the list, but it was the tradition of the list that was important to me. So I'm carrying on the tradition here.

I remember the one Christmas when there was no money at all. You gave me a record, the only thing you could afford. That was the only gift I received that year. I was a Junior in high school. Then I was devastated. Now I see the sacrifice of what you did and the love behind it. I still have the record although I don't have a record player. That record is a symbol of your sacrifice that Christmas.

Here comes the list. Sending it to Heaven:

I need a small record player to play that record you gave me (see above).

I need a house, one I can live in outside the circle of Dothan, in a quiet place where there is no traffic or neighbors. One level so that I can get around easily. Quiet so that I can finally write again. I need to be happy. Oh how I wish I could wake up in a house of my own in a very quiet place and feel at home!

Since I'm stuck in an apartment, I need a storm door with glass that raises so that I can have fresh air come into this apartment. You can't raise windows and walk away. Since I'm ground floor, someone can crawl in. Storm doors can be locked and the window on them raised so that fresh air comes in.

So, my dear brother, since you are in Heaven and hopefully can read my wish list this year, I have some wants, too. I want an old vintage pie safe. I don't have space for dishes and have wanted a pie safe ever since grandma had one. But they are so expensive now. Top of my want list is a vintage pie safe.

Second on my want list is a big chair with ottoman. My sofa and loveseat are wearing out fast. It is hard to get up and out now that my body is consumed with arthritis and I have to pull myself up and steady with a cane. I want a big chair to rest in, an ottoman to raise my feet since they swell so badly from this horrible disease and the ton of meds I take. I guess it would also fall in need list.

I can hear you laughing now, my dear brother, for you could never fill the want or need list when you were here on this earth. The one wish I would put to the very top would be to have you, mama and daddy home with me for Thanksgiving and Christmas. But your home in Heaven is far better than this earth. I miss you, my dear brother, and long to see you again. Hoping the years won't be long before I am blessed to be "home" with you, mama and daddy.

Saturday, November 14, 2009

Looks Like Holidays Have Begun

I saw a Christmas tree in the apartment manager's office yesterday. Tired of commercials for Christmas already. Sales Sales Sales. Even talk of Christmas parties have emerged.

I don't have a Christmas party to attend. I don't have any family to shop for. I don't have any family members to share Christmas or Thanksgiving with anymore. It is a very sad time of year for me.

If I could hybernate through the holidays, I'd be a happy woman. Instead I have to turn it off in my head and protect my heart from breaking. Never succeed at that attempt.

Hold on tight. The storms are about to begin.

Tuesday, November 10, 2009

This is why I Hate Dothan

I was called on the carpet for calling the police about the loud music situation on the weekend. See post below. Truth is they didn't want the attention drawn to them for some reason.

Tired of having my rights called upon when I am quiet and never bother anyone. When I stand up for something that is driving me crazy, I get called on the carpet for it. This town is unbelievable.

I would give anything to have enough money to move out of Dothan. Life is too short, especially mine. I'd like to go out happy and at peace.

Sunday, November 8, 2009

You've Got to Be Kidding me!

He said "It is Sunday and I can play as loud as I want. I pay rent and won't turn it down." Of course, I said I would call the cops, but he didn't care. So I did. He's Spanish. Not sure if he understood everything I said so I would let the police tell him.

When I was heading over there, two small chickens came out of the bushes. My friend had seen him with them earlier and he told her he was raising them. Now I live in an apartment complex with over 100 apartments IN TOWN. There are two chickens running around in the bushes, sidewalk, parking lot.

Police came and talked to him which seemed to help. Left the chickens though. I called Animal Control. The recording told another number to contact on weekends. I was told there was no animal control officer on duty during the weekend and I would have to wait and call them tomorrow morning. What was the number for then?

There are still two chickens running around in front of my apartment. Not something to see everyday. Wish the Animal control would come and rescue them before someone runs over them!

Saturday, November 7, 2009

GOOD SAVANNAH

I am so thankful for Sandy treating me to a trip to Savannah, GA. It was beautiful! It was also very historical. We went on two ghost walks, were educated about Savannah and the haunted houses. Even stayed in a haunted hotel...someone kept rattling our door knob. Never saw one, but surely felt something going on.

Loved Mercer-Williams house. Wish we could have taken photos inside, but it was a "no touch no photos" kind of place. Went to Sorrel-Weeds house. Determined to be very haunted by the TAPS team. They were there on Halloween. We had one of their staff go on the ghost walk Sunday night. Was so cool!

So much in such a short time. Will sort out as I can. Recovering.

Monday, October 19, 2009

Bad day in the ER

I spent the day in the Emergency Room Sunday. Severe chest pains, throwing up, abdominal pains. Since I have that aortic aneurysm below my heart, they took me on back. It seemed to be fine, but all the symptoms lead to it. My white blood count was way through the roof. I had chostocondritis, inflamed ribs. Every one was so inflamed it felt as though I was having a heart attack. Connected to lupus flare. I just can't seem to stop being sick lately. Since I moved, I came down with swine flu two days after, severe lupus flares for two weeks and now the chosto. Sent me home with MORE meds! Just what I needed.
As always, the ER was a bad experience. Wish they would understand the word "emergency." Lingered in the triage room while two nurses were talking about other things. One was teaching the other. Asked for my meds list and realized I didn't have it. Told them I have Medic Alert and my number was on this bracelet. Offered her the info. No one ever asked for my meds again.
After asking a hundred questions, hooked me up to machines, took an x-ray of my chest, brought me back and left. No one came in for two hours. Had to ask the nurse to get a doctor. Begged for pain meds. Finally after four more hours, pain meds came. My heart monitor kept going off as "ahrithmia". No one ever came in to check it. I asked a nurse, who finally brought pain meds, why no one was checking it. He didn't say a word. No one ever explained what was going on, I had to ask for test results before I left, and this was the clincher of all. Doctor said I had a through the roof white blood count. Asked if I had a possible kidney infection. I told him I had systemic lupus. He replied, "Well, Duh! That's what is causing all of this."
When doctor said I could have ice, I asked for it. He wrote the request on the chart. Had to beg twice for it before they brought it in an hour or so later. The second time, Sandy's sister went out and bought a large cup of ice. I had asked nurses station twice within the two hours and they never responded. I know it may sound petty, but when you're strapped down with things hooked up to you in extreme pain, the least they could do it bring you a cup of ice.
I would have stayed later if I hadn't reached the point of being tired of sitting up in a bed with no one doing anything. I could hurt at home as much as there. I called and told them I want to go home. He came in and said he'd sign the papers. That's when I asked what the test results were. I could barely stand up to get in the wheelchair when leaving.
This is suppose to be the GOOD hospital of the two in Dothan. So if you're having chest pains and sick sick sick, call an ambulance. You'll have a better chance.
I sat up for hours last night because it hurt to lie down. I'm breathing some better, but the pain is still intense. Can only keep down liquids, too. Will be a long haul.

Friday, October 16, 2009

Cold Snap

Today it was in the 60's. Tonight it is in the 40's - my kind of weather!! Was all set to put a blanket on the bed, but found out I didn't need one. When I walked back inside my place tonight, it was so warm and snug without heat. I thank God for that! The old place would be freezing tonight.

I'm thankful for a new place to live, especially now that winter is coming.

Thursday, October 15, 2009

LIVING IN DOTHAN, AL

Rode by the old place on Laurel the other day. Seems they are gutting the place. There was wood and debris everywhere on the front lawn. They needed to rip out so much, get rid of the mold, and rewire the whole place. Hope they do the latter.

Upsets me that they did nothing while I lived there. I had to live among the floors falling in, ceiling falling down on me, bad wiring, extreme mold in the bathroom, no insulation, bad air/heat unit always breaking down, among so much more. Ten years of it. It reached the point I had to beg for someone to fix the broken pipes underneath the place twice. Why?! There's no excuse for it.

Landlord has over 30 properties, but is bad about keeping them up. Sad to know he's on a top committee in the Dothan government.

Noticed two new vehicles were in front of the other side. Seems the woman who smoked me out of there has moved already and someone else has moved in. She lasted about four months. I'm thankful I moved though. It would always be the same. I'd never know who would move in (i.e. the drug addict two years ago). Never felt safe after that.


I know you reap what you sow, but I surely would like to see the reaping. I'm never there to see it happen.

LIVING IN DOTHAN

I've lived in Dothan for a long long time. Moved here after I returned from KY (college) and worked here. My self esteen has taken such a beating over the years that I don't feel like I'm alive anymore. The people here are so society/class oriented yet claim to be devout Christians. The two don't go together.

Every job I've had over the years has been an experience. My teaching years were wonderful with the kids. I loved them. The parents....well, most were typical.

If you ever want to lose your self esteem altogether, work in a church. I did twice. The society/class people are members of the churches. They step on you very hard. My second church job involved two ministers who single handedly made me feel like a nothing.

Living in a quiet neighborhood in the Historic district was needed, but I couldn't stand the neighbors after a few years. I lived next door to an obsessed animal hating preacher. He was a manipulator and did all he could to destroy me because I stood up to him and wouldn't let him walk all over me. He's one I want to see "You reap what you sow."

The woman on the corner was the neighborhood gossip. Retired elementary teacher, she didn't have much to do except stay in other's affairs. Teamed up with the preacher, they did a lot of damage.

The neighbors behind me never associated with me until the woman came over to ask me not to feed the cat in my backyard. When she stepped inside, you'd think she had stepped into a void of poverty. I've never been so disgusted with neighbors.

Christmas and Thanksgiving came and went. No one knocked on my door to even wish me a good holiday. They knew my family had all died and I was alone in the world. They just didn't care. I did wish them happy holidays. I did make the effort.

I never bothered anyone. Stayed inside or in the backyard most of the time. Spoke when I was spoken to. Never bothered a soul. Yet, I was literally destroyed in this neighborhood, a place where they didn't even associate with each other. I was so afraid I'd pass out in the yard and be left there till someone else passed by the road and called for help.

If you know someone planning to move to Dothan, AL , I'd advice not to. If you are high society minded, come on. It is a perfect place for you. Southern hospitality is a myth here.

I am so very thankful to the handful of people who have been kind to me. They are the treasures here.

If I could afford to move out of this town, out of this state, I'd do it in a heartbeat. But I'm stuck among the muck. I'll never understand why.

Saturday, October 3, 2009

A new Quote

"How can you go through life and not help those in need?" unknown

Do Dreams Still Come true?

Each new day I am so thankful to be able to get out of bed. So many days I can't because of the extreme flares of systemic lupus. The more years that pass, the more extreme the pain. I am very thankful to stand in a shower (when I can) and not take it for granted. When you're sick, you become more thankful for things you never thought about before. Even though all of my family, mom, dad, only brother, grandparents, aunts and uncles, have passed away, I am thankful for my best friend. God sent an angel when He sent her. How I wish I were able to do something special to thank her for always sticking by me and being there when I needed her.

I use to dream all of the time. Dreams and much prayer opened the door for me to go to college and work my way through (hard to pay for it on your own). That diploma is like gold to me. First person to graduate from college in my family. My mother was able to hold that diploma in her hands before she passed away. I will never forget that moment.

When you're sick, money is hard to come by. Tons of meds cost so much, doctors, extremely fixed income. Hard to make it month to month on $700.00 when your rent is over $400.00. So you juggle meds, food, turn off electricity and sit in the dark. I love candles.

I still dream about going back to school to get my master's degree, something I long to do before I die. As always, the wall of no finance stands between me and that degree. I've dreamed of a masters in psychology so that I can help others and make a real difference in someone's life. It also opens a door for me to be able to control work hours.

I've always wanted to teach in a college, but lack the master's degree to do so. I miss teaching. It was the most beautiful experience of my life. Each day was different and I asked God every morning to please use me as His vessel to make a difference in the lives He put in my hands. I saw and experienced so much of His love when I was a teacher. I miss the purpose in my life, the purpose that was focused on young lives who needed someone to believe in them, to listen and to care.

Do dreams still come true? I hope and pray this one will for me some day. I pray that wall of cost and lack of funds will fall and allow me to go forward with His plan for my life.

Thursday, October 1, 2009

LOVE the Cool air

It is 71 degrees at 11:00 a.m. I love the cooler air. However, the weather change really hurts. I've been in extreme pain for the past three days. Even my hair hurts!! So no sleep....which results in more lupus flares. It is like knocking down dominoes. One event affects another. Still, I'll take the cooler air anytime!

Ever wonder what it is like to live with a debilitating disease like Lupus? Here's a good description:

 
The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said "Here you go, you have Lupus". She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared"

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted "spoons" and I chose to spend this time with you."

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

© 2003 by Christine Miserandino Butyoudontlooksick.com
Please note that this story is copyrighted and should not be reprinted in any form without permission from the author. Feel free link to "The Spoon Theory" at www.butyoudontlooksick.com/the_spoon_theory - Thank you

Wednesday, September 30, 2009

Another Lupus day

Pain is extreme. Also have a headache three days old. Geesh! So tired of being sick. No strength. Heading back to bed.

Forgot to post my new address:

1000 S. Edgewood Dr. Apt. Y-95
Dothan, AL 36301

SO VERY thankful.

Friday, September 25, 2009

Now Fall, but 92 degrees

Even though it is officially Fall, it was 92 degrees here today. Wishing we could have four seasons instead of two: HOT and minimum cold. Wish we would have a long cold winter!!

My two cats, Rascal and Prissy, don't seem to let it affect them. Since we're in a much cooler place, they've become so playful and frisky. Rascal has become a lap cat, something he hasn't done since being a kitten. I think since they are in a cooler nicer place, they've started sleeping better and more energetic. Not back for a ten and eleven year old!

Something to Look Forward to...

Sandy has decided we should go to Savannah for Halloween. She's footing the hotel bill and we'll Burger king it as much as possible. I've always wanted to go on a Ghost walk so we're doing that, too.

Have always wanted to see Savannah, GA. So thankful to be going!

Thursday, September 17, 2009

So Tired

ght I haven't slept through the night in three days. Last night was very bad. I slept two hours after falling asleep around 5:30 a.m. The pain has been unbearable from the lupus. I've never felt this kind of pain before. The meds don't touch it.

Just want to sleep again...pain free.

Monday, September 14, 2009

I'm Mad

Had to get my flu shot for the year today. Going past my old place, I saw a pile of stuff thrown out. Everything that was in the backyard for planting, the potting table, flower pots with plants in them and a couple of my outdoor chairs I left for the next tennant, a very large tropical plant I left beside the building because it was too large to take and had grown through the pot....all had been throw beside the road for the trash to pick up. We stopped and took the two chairs and one hanging flower pot with flowers inside. I'm mad because it was all set up for a gardener. All items are in the trash and I have no room to rescue it all.

I feel like every bit of my presence has been hauled to the dumpster, thrown away as if I never lived there. Ten years. Many years before I lived there also. Nothing left.

I'm also mad because I was put in a position that forced me to have to move. The extreme heaving cigarette smoke from next door pouring into my side causing me to become sicker, renting to someone next door whose boyfriend would soon be moving in after he got out of jail for drugs, NO credit check on either of them.

I never bothered a soul. Only contacted the Clarks when something was wrong like the time the bedroom ceiling caved in on me, the sinks backed up, toilet was broken, air conditioning and heat quit working. I never bothered the neighbors. I was respectful. NONE of it mattered. None. I've been swept away. I feel as though I never mattered, left no mark.

If only they had kept the place up to date with repairs, if only they had done a credit/background check on the residents next door, enforced the no smoking as it was listed in the ad, if only they would take responsibility for THEIR actions and Do what they say they would do.....a motto they use in the business, but don't follow with their renters. I would not have been put through the horrible stress of moving, begging for help, being disappointed all over again because of the lack of care from people I knew.

With all the people who have come and gone in my life, my friends from college, church, work, etc., Why was I put in a position to beg for help? What has happened to love and care in this world? I'm so mad I'm sick and am so limited in doing what my heart longs to do. I'm so mad I can't work anymore and must struggle with counting pennies just to make it. I'm so mad my life has been reduced to having no purpose, no family, no encouragement, no love.

My mad has broken the last end of my heart and I don't know how to get it back. I've lost all faith in people and I don't know how to renew it.

Wednesday, September 9, 2009

Wednesday

I woke up at 2:00 a.m. and couldn't go back to sleep. With lupus, insomnia is frequent. I've run the gammut: moving stress, swine flu, very bad lupus flare, and now insomnia. Fevers have returned, too.

I'm so very thankful for the new place where I live. However, life is the same. Being alone is so stressful on its own. Being sick so much, my views are of my bedroom or livingroom. The heat outside is still bad (add on humidity and high dew point) and when I get hot, I'm sick! It is so much cooler here, but when humidity and dew point soar, I get hot. Still longing to live where all four seasons are present and the heat isn't bad in the summer. The pressure cooker that is S. Alabama is miserable.

Still have boxes in the spare bedroom. If I unpack one box a day, I'm happy. Right now it is all I can do.

I miss my health. I miss being able to go to work, have a purpose in life, have a reason to get up. I miss my family so much. Heaven is only a breath a way, but seems like a million miles when you've lost all of your family.

Still struggling financially. The meds, medical bills, etc. always drown me each month. The only thing that doesn't cost money is dreaming. I dream of a home of my own, clean, decorated, warm in winter and cool in summer. A home in the country or at least outside of the Dothan circle. I still feel trapped in this town. The commission raises costs of everything. They are not wise stewards of the money God gives them. In the end, we pay and pay and pay.

I'm so thankful it is Fall. Just wish the temps would catch up with the season. Won't really cool down here till late October. Looking forward to curling up under blankets.

I am so thankful for Jill. Without her, I wouldn't have been able to move into this new place. I'm thankful for Shirley and Lynn helping me with a moving van. That made the whole world difference.

If only I could get rid of this disease. I ask my doctor where his magic wand is. He wishes he had one. I just want a life again...

Saturday, August 29, 2009

Can't Win!

I feel so bad because a friend sent me two cards with gifts inside. I never received them in the mail. I know it is hard during mail transition when you move, but I don't know what to do. I can report both to the post office, but I don't know what they will do, if anything. Scares me to know I am not getting all of my mail. Hate it more that she's out the gifts inside.

I'm still trying to recover from the swine flu. My system has been weakened from it and systemic lupus hasn't helped. For the past two days I have been unable to accomplish anything. I can't function physically or mentally.

Lord, please take this illness away!

Monday, August 24, 2009

The End Results

When Prissy woke me up this morning, I didn't realize how bad I felt till I got out of bed. I ran into the bathroom door, weaved up and down through the hallway and kitchen. I feel like a truck ran over me and backed up.

The cough is still there, but so much better. Not all gone yet, but I think the swine flu is on its way out. From the weaving and dizziness, swollen, joint pains, etc., I can say lupus has taken over. If only my body would learn to fight illness instead of itself! That is the nature of the lupus illness. The Lupus truck ran over me once again.

Still have boxes everywhere in the back bedroom and mine, and the hallway. There was a time one weekend would have been enough. Now if I finish this in a month I'll be doing great.

Back to bed.

Sunday, August 23, 2009

An Update

It has been some week! Moved, boxes everywhere, and then come down with swine flu. I haven't felt this bad in a long time. High fevers of 102 for hours on end, coughing non-stop, sore throat...this stuff is miserable.

First time I went to the doctor was to see my rheumatologist (who treats the lupus). When they took my temperature, it was 102. They spent the remainder of the time walking around me, setting up a chest x-ray, and blood tests/flu tests. My doctor said if the test came back negative, he would talk with someone to find out why I was having so many infections. I have had a terrible lupus sore in my right ear for two weeks. I went in with pain and walked out with pain.

Went for the tests. Blood test turned out to be a blood culture. Involved several bottles of blood. My doctor waited upstairs till the results came back. He even pushed the lab. When I walked in the door, phone rang. Said my tests were negative for flu. Said to stay in bed and drink plenty of liquids. Just amazed me. I was running a high fever and had all the symptoms, went in totally miserable, and they did nothing. No meds to soothe my pains, get rid of the fever or stop the coughing. Nothing. And did not talk with anyone to find out why I was having so many infections.

The next day I was so miserable I decided to go to another doctor, one who treated more than lupus. They did another flu test and it came back positive. He said sometimes the virus hasn't had time to show up enough to be detected on the test, sort of like a pregnancy test. By Thursday, it was there. He gave me tamiflu, told me what to take for the fever and gave me something for my throat. By Friday I was feeling better. Gave me an ointment to heal the sore in my ear. It is slowly helping, but the pain, redness and infection are still there.

Sometimes I wonder about doctors. Are they so busy trying to avoid what you have that they fail to help?

I am a huge believer in tamiflu now. Still coughing and having stray fevers, but nothing like it was.

This morning I unpacked a couple of boxes before I was worn out and went back to bed. This stuff really wipes you out.

Rascal and Prissy love this place. Friday night I found Rascal's balls and tossed them around. I haven't seen him play like this since he was a kitten. Was quite entertaining. Prissy has wandered out of the bedroom if only for a moment. She has won again...her food is in my room.

I realized Friday how dull everything was. I have no color in my living room. Wish I had the gift of decorating, but I don't. Can't paint the walls so color must come from other things. My furniture is just a lighter shade of the carpet. Didn't notice places had been repaired until some of the boxes were unpacked and removed. Will need to get a rug for the living room.

I had to wash clothes today as my basket was overflowing. It was so nice to walk down the hall a few steps just to wash instead of sending the basket down a flight of stairs and having to drag them back up when clean. I'm thankful for so many things. I also found out my old neighbor's boyfriend got out of jail this week. I got out just in time.

I just hope and pray some day before this life ends, I can live in a house of my own in a safe place.

Monday, August 10, 2009

Counting Down the Days

Still packing. Amazing the stuff you accumulate over ten years. Sandy helped me pack tonight and last night. Almost finished with downstairs. Just a few things in the livingroom. Two rooms upstairs next.

The heat is intense here. Heat index was 106 today. This place is an oven even with the air on. Also has caused another flare. I feel so sick! Just have to hang on till all is moved on Saturday. It is the transferring of electricity, phone, etc. that is time consuming.

It hurts just to type. Looked in the mirror and couldn't believe how swollen I was.

Neighbor next door now has a friend who joins her for the smoke fest. Last night they almost suffocated me! Won't miss that. Just hate the lady is pregnant and smoking. I've told her the dangers, but she doesn't care.

Thursday, July 30, 2009

MIRACLES DO HAPPEN!

During the most difficult time in my life, God sent an Angel. She helped me get into another apartment. Says so much about trusting others, especially when you've never met.

No matter what happens in life, God always sends a way. I am so thankful He sent me an Angel. So many could learn from her example....especially my church.

Moving on the 15th. Good thing. I've been sick for a week! Can't get rid of the infection set in from the tonsillitis and lupus flare.

Now trying to find $100.00 for deposit to turn on the gas for the hot water heater. I think it is definently a necessity. Don't understand how an apartment can be total electric except for a gas hot water heater!

Where I am now, the walls are dark, the surroundings are dark, and it has greatly affected my life. My new place will be all light. God opens a door....He truly does.

Wednesday, July 22, 2009

SICK AGAIN!

Thanks to the pregnant woman who lives next door and smokes all of the time, the smoke comes over here. It caused a severe sinus infection, 102 fever, and my throat closed up. Ended up at the doctors very sick yesterday. Said I had the worse case of tonsilitis he's seen in a long time. I couldn't breathe by the time my appointment rolled around.

The infection has caused a bad lupus flare. Yesterday the fever was so bad I was hallucinating: saw my dad and heard someone running through the kitchen in flip flops. Of course, there wasn't anyone there. I thought my dad had come to take me home.

She's gonna kill me from the smoke.

Back to bed.

Monday, July 20, 2009

Wishing It were NOT True

In this day and age you never know when someone is telling the truth about their situation. It makes you hesitate, question, wonder. I just wish my story WASN'T true, but it is...every word. It is so hurtful when people question whether you're telling the truth or not, but understandable. I've been lied to so many times.

But it is true. Every word. And the past few months my good beliefs in people have gone down. Just remember you could be one illness away from my life. It only takes a life long illness to wipe you out financially. It only takes one lay off to do the same, but you have hope of a new job and a better life. When you're sick and have NO family, it is so easy to give up. People treat you differently. Friends leave. Even a church cares more about those who have much than those who are hurting and in need.

I'm so thankful for the one person who reached out to me. She questioned, but still cared. I can't tell you how priceless that was. It was a gift I'll always remember.

Today I feel like people are all the same...just like the ones here. They just don't care. Sad to know I live in the "Southern Hospitality" area. Trust me, if you have nothing, southern hospitality doesn't exist.

Today I need a miracle. I'm so thankful my faith in God has not waivered.

Updated my Ebay Selling List

I updated my ebay list. Hoping it will help move me out of here:

http://shop.ebay.com/merchant/maryjcal_W0QQ_nkwZQQ_armrsZ1QQ_fromZQQ_ipgZ

Where My Faith Lies...

After the experiences with people I've had in the past, in the past few weeks, and days, I'm so thankful my faith doesn't lie in people, but in God.

Sunday, July 19, 2009

Waking UP on a Sunday

As always, when I woke up this morning I was hit in the face with a ton of cigarette smoke. When the neighbor next door smokes, it pours over here. I've begged her three times to please smoke outside, but she has no intention of doing so. This morning it made me so sick that I threw up. I have pain in my lungs and know what's coming....lupus attack. The last time this happened, I ended up in the ER and hospital on full oxygen. That was the day they found the aneurysm underneath my heart.

There is NO insulation in this place. None. When someone smokes next door, I fills up every inch of my place. I'm so tired of being sick. Lupus flares are back to back these days. Feel so helpless because there is no one to stand up for me when I'm sick and weak. I've spent my entire life having to fight for something...my mother's care, my dad's VA hospital care, my brother's treatments. I've had to make sure my meds were given correctly in the hospital, the nurse came when I called because there is no one else to help. Now I'm so weak that it is hard to fight. Sometimes I just wish I had one person to fight for me, to check on me when I'm so sick I can't get out of bed. My best friend is there to help me when she can, but she's like an ostrich. She sticks her head in the sand when trouble comes. I don't have anyone to stand up for me when I need someone.

It also makes me so sad to know the woman next door smokes like a chimney and is five months pregnant. I tried to explain to her the kind of damage that can happen to a baby, but she had a baby four years ago, smoked with him, and he came out just fine. She has no idea what damage has been done till he goes to school, participates in society, etc. Then again, she's lied about several things already so she could be lying about that. I have yet to see a child. When her boyfriend gets out of jail, she said he's coming to live with her. From strong sources, I found out he's a crack head. I also looked up the jail online, his name, and see he's been arrested for forgery and theft. Just what I needed! MORE stress!!

I am sad today because there is not one single soul from my church who cares enough to help me. Not one. I will never understand when someone begs for help in a situation they can do nothing about why the church ignores them. One minister has visited me in the hospital in several years. Sad. Christians are suppose to be like Christ. I know he doesn't ignore the needs of people. I'm thankful he doesn't. How ashamed he must be of his people.

I look to God for help and ask for a miracle. It will take a miracle for me to get out of this situation, a situation I did not cause. Why am I being punished? I took care of my mom, dad, and only brother when they were sick and dying. I had to bury my brother and dad. My brother took care of my mom's death. What have I done to be punished??? Dear God, please tell me.

Thursday, July 16, 2009

Recovery day

Since my best friend had to drive her sick computer to FL Wednesday, I was able to go with her and get out of Dothan. First time since January. I've never been so thankful to get out of here and away from the stressful situation I'm living in. It was a drive down and back trip, but I was so glad to be out of here.

Unfortunately, with every good thing comes reaction to health. Woke up with a high fever today and swollen joints. Good things sometimes bring lupus flares. Yesterday did just that. I'm so sick today.

No change on the moving situation. I'm to the point of just giving up.

Monday, July 13, 2009

STILL Need Help to Move!

When someone walks into my place, they say "What a beautiful old apartment!" What they don't know is what I live with day to day. Mold in the bathroom, rotten wood, wiring so bad that you can't wash clothes on one side while the other side is washing. Can't turn on more than one appliance at a time. Pipes are rotten. Had to do without water three days in a row while the landlord waited to send someone to repair the pipes. Next week it was two. When you turn on the shower, more than half goes out the faucet head instead of the shower head. NO insulation. Did I mention the wiring was dangerous?! The light in the living room hasn't worked since I moved in. I almost fell through the bathroom floor before it was repaired. The landlord almost fell through the kitchen floor before he had it repaired. Found out the linoleum was the only thing holding up the floor. The bedroom ceiling fell in on me sending me to the ER with a concussion. The windows are all painted shut. Should a fire occur and I was upstairs, I would be trapped.

Now a new neighbor. We share a full wall. She smokes inside and I have begged her to smoke outside. With no insulation, the smoke pours over here. My lungs are damaged by lupus and makes me terribly sick. She told me her boyfriend is in jail. When he gets out, he will move in next door. I did some research and found out he is a crack head and was arrested for robbery and forgery. This terrifies me after a drug addict/prostitute moved in over three years ago. Took three months of police involvement before she would go. She had drugs delivered to the front door every night. Her drug friends stayed next door all of the time. She prostituted to make the rent. I ended up with a mini stroke that summer. If only the landlord would do a check on the person before they moved in. Unfortunately, as long as they give him money, they're in. Now I'm afraid, sick and stuck. If I could just get the money needed to put down deposits and move, I WOULD. How can I do this on an extremely fixed income. My rent is more than half. Utilities, LOTS of medicines, etc. take up the rest. I'm so desperate at this point I just don't know what to do.

If someone reads this post and can please help me get out of here, PLEASE, contact me. I have no one to go to.

Sunday, July 12, 2009

On Judging Others...


I am always amazed at people. When you think you've got a certain image of someone, you find out you're completely wrong. Our human nature allows us to pass judgement on others even though God says He is the judge of all. We really don't have the right to do so. Yet we find ourselves passing judgement with everyone whose path we cross.

I have encountered many different types of people from one extreme to the other. Some may dress better than others. Some may have huge homes and cars while others live with what they need. It matters not what we think of someone, but how God sees them and us. Forgive me, Lord, for judging someone because of their circumstances. Even though I worked from the time I was 16, even working my way through college, I don't have any right to judge anyone whose circumstances are different than mine. When the doctor said I could work no more, it literally shattered my life. I had just buried my dad, buried my only brother two years before and my mom eleven years before then. Seems like life just slapped me coming around every corner.


I worked so hard and took care of my immediate family even sacrificing my own chance of a husband and family of my own. When I developed a chronic illness and the extreme expense that goes with it, I felt as though I was being punished for something that I had yet to figure out.

Over the past few years it seemed as though life stopped. No one needed me anymore. I was constantly being sent for hospital tests, doctor visits, adding more medications. When the ER doctor found an aortic thoracic aneurysm growing just below my heart, I wondered then what I had done to deserve this. The aneurysm is checked once a year and has reached 4.7 cm. Surgery is required at 5.0 cm.

With each year passing, I wondered if I would ever get another opportunity in my life to make a difference. No one at my church cared enough to visit me. I could only get out for the grocery store, pharmacy and doctors. More and more I became so isolated that I wondered why God hadn't taken me Home yet. I had served my purpose. I was a teacher. I took care of my parents and brother until they all passed away before I was 35 yrs. old. I lost my health to a horrible disease. I lost my ability to get out into the world and make a difference. Those words haunt me even more as my college instilled in us to always make a difference (
www.asbury.edu).

I am amazed at how people's opinions of me have changed over the years simply because I am not in the working world, I struggle to make it every month, I don't dress like a professional anymore, and medications have put so much weight on me. I'm still the same person only a bit more wise from life's lessons. I always had great admiration for my father. He didn't have a high school education, but worked so hard to care for his family. He was a simple man and only lived by what he needed. Our world today says we're nothing without a large house, car, fabulous job, community (society) status. So many have worked their way up and out into the society mentality that they have forgotten what it feels like to struggle and be so tired from struggling.

When you have someone in your life who loves you, who encourages you, you are rich indeed. Without love, there is no life. How I wish many others would appreciate the one true gift from God...love.

Then God brings someone down your path who has worked hard to take care of his family, has obtained all the world has to offer, and yet is humbled because of his growing up experiences. So few forget and go on never giving back to make a difference. Today I was touched by a man whose humble beginning is still with him, whose heart appears to be as big as the world, and whose life is definitely touched by the Hand of God. I know when God blesses someone so abundantly in life's bounty as well as a loving, kind heart, He expects more from that person. My prayer is that He will indeed bless this man's life, open many doors to the lives of those around him who will be touched by his life. We are all vessels God uses to bless others whether we are aware of it or not. I am thankful God used him to remind me there are still good people who seek His will.

Saturday, July 4, 2009

Words...

Being a life-long writer, you'd think words would be golden to me. As the years have passed I have learned that words are just that...words. Without any action behind them, they are merely words.

Someone promised to find a way to help me move many months ago. I actually let myself believe they were sincere and started looking forward to the help. Each week, this someone says the same thing, "I'll help you any way I can." But over time, they've become just words.

I know the Bible says faith without works is dead. Making promises to a desperate person would fall under those words.

"
"For as the body without the spirit is dead, so faith without works is dead also."
JAMES 2:26

Would you give a hungry person a cookbook or food? Would you give a broken heart love or just words?

I keep thinking about the story of the Good Samaritan. So many stepped over the injured man and kept going. So many do the same thing today blaming it on a busy life. One person stopped and made a difference.

Lord, please don't allow my life to continue on this earth unless it makes a difference.

The Good Samaritan: LUKE 10:25-37

29But he wanted to justify himself, so he asked Jesus, "And who is my neighbor?"
30In reply Jesus said: "A man was going down from Jerusalem to Jericho, when he fell into the hands of robbers. They stripped him of his clothes, beat him and went away, leaving him half dead. 31A priest happened to be going down the same road, and when he saw the man, he passed by on the other side. 32So too, a Levite, when he came to the place and saw him, passed by on the other side. 33But a Samaritan, as he traveled, came where the man was; and when he saw him, he took pity on him. 34He went to him and bandaged his wounds, pouring on oil and wine. Then he put the man on his own donkey, took him to an inn and took care of him. 35The next day he took out two silver coins[c] and gave them to the innkeeper. 'Look after him,' he said, 'and when I return, I will reimburse you for any extra expense you may have.'
36"Which of these three do you think was a neighbor to the man who fell into the hands of robbers?"
37The expert in the law replied, "The one who had mercy on him." Jesus told him, "Go and do likewise."

Asking for a Miracle

I need a financial miracle in order to move. With the cost of deposits and rent, it would total $900.00. Please, Lord, send help. Intervene. Let someone hear me.

Friday, July 3, 2009

Ten Years Ago Today

Ten years ago today, I met Kevin Spacey. Here's my story:

Meeting Kevin Spacey in NY "Iceman Cometh"I met Kevin Spacey on July 3,1999 in NYC after "The Iceman Cometh" on Broadway, my first and only Broadway play. We finally got tickets for my best friend and me to go see the play, "The Iceman Cometh." Let me say right now without her help this dream would never have come true. I ADORE Kevin. He's the one man who can walk into a room and literally take my breath away! We went to NY, saw the play, stood at the back of the crowd and came home the next day. I move up a few people and he leaned over my left shoulder to sign a photo. His face was two inches from mine. I nearly died. We arrived back home that Sunday and there was a message on my answering machine, "Kevin Spacey would like for you to come backstage to meet him after the play". Message was left Friday. I got it on Sunday. I live alone. There was no one home to call me and relay the message. I cried and cried as my best friend just stood there saying, "Unbelieveable!"

I had forgotten I had written a letter to the theater to see where the actors would come out for autographs. It was important that I not be exposed to the heat or if I could get there for the matinee, not be exposed to sun as it activates lupus. I had written only to inquire about the location. I told them why I needed to know as I was sick and couldn't endure the heat. The letter was passed on to Kevin. After pulling myself together from missing a wonderful opportunity, I called his assistant back and asked if we could do this again the next weekend. So my friend and I flew back to NY the following Friday.

By then I was really sick from a lupus flare and the heat and travel caused me to swell and have to use my cane to walk. I had two braces on my knees because the joints had become swollen and it was hard to walk. My meds had added weight to me and my face. I felt like an ugly duckling and was so afraid he would have that ever familiar look of fear I've seen on other people's faces, the look of "oh she's sick, don't touch". We went to the theater around 10:30 p.m. to stand near the door. When we arrived we saw Kevin looking out the door. I was terrified as it really surprised me. I tried to talk my friend into portraying me for the moment because I looked so horrible from the illness and meds. I was terrified he would walk into the room and would turn away from the sickly site of me. The man at the door said, "Oh, we've been waiting for you" and said Kevin had just looked out the back door to see if we had arrived yet.

Then I was scared. We sat in the green room listening to him give his final speech over the intercom and then he walked to the back door past us. I almost fainted. He stopped in the door and said, "Mary?" and I went deaf. I stood up, he hugged me, and we had a photo taken. Then we spent fifteen minutes with Kevin talking about life, the play, his plans later after the play, my life. He was so compassionate and understanding, hugged me twice and never once looked at me like I was a sick pathetic soul. I actually felt like Cinderella.

Before he had to go back onstage for bows, he took my hand in his and covered it with the other, held it a moment and kissed my hand and thanked me for coming all the way back from S. Alabama just to meet him. And yes, ladies, he has the most beautiful brown eyes and his hands are so large and so very soft!

I found out also that the week before he sent someone into the crowd to look for me and couldn't find me anywhere.He also left a message for me at the box office. We had tickets already so didn't need to stop by the box office. He went to great lengths for this to happen to me. I have only one regret. My friend says I'm silly, but he asked what we were doing on Sunday before leaving for home that evening. We said we were going to the museum. He said he hadn't been to the museum in a long long time. Normally, I would have said, "Come go with us", but I didn't because of whom he was. Now I regret at least not saying it....why didn't I say it?

It was indeed one of the most beautiful moments of my life and I will treasure it always. I think about it when I go for medical tests for my lupus, or am in the emergency room or hospital. That memory is my positive thought. I'll never be able to repay him for what he did for me that day. He has a wonderfully big heart, is extremely intelligent, and is so very compassionate.

Someone asked how I got the photo signed. This didn't happen till almost three years later. A friend of mine's aunt played bridge with Kevin's mom. The aunt told her my story and how I forgot to get an autograph when backstage. Mrs. Fowler told me to send it to her and she'd take care of it. I sent it, a letter to her, and a SASE envelope to return it in. About eight months later, the photo arrived back to me autographed and sent back from Kevin. So I guess this story was a Trilogy of sorts.

NEED to Move

I need $900.00 in order to move from this place. This covers deposits.

If I don't find a way to move, I will have a heat stroke! I'll be going out feet first.

Still hoping for a miracle!

Tuesday, June 30, 2009

NOW I UNDERSTAND

I understand how my father felt now. With my brother gone, me working, him alone at home during the day. I understand the overwhelming loneliness that encompassed him. With people going here and there to work, vacations, their own daily lives. I understand why he was so happy to see me come home at the end of the day. I feel his loneliness.

But he was the lucky one. He had someone come home at the end of the day. He had someone who loved and cared for him. He was not alone.

Sometimes I ask God why He left me here alone. I can't bear it. But still, others come and go on their way to work, vacations, in their own daily lives. Me? I am here alone, sick, and praying God will change my life for the better.

Friday, June 26, 2009

NO Change

Everything is still the same from the last post. Heat is still very bad. However, it has dropped down below 100 degrees (heat index still high). Still, NOTHING has changed. No rescue. Nothing.

I have to remind myself to keep my eyes toward Heaven. Just as I've said in previous posts, people don't care past their own families. I can count on one hand the people who have made a difference in my life, especially during the hard times of recent.

I wish I could post something wonderful, but I can't.

Tuesday, June 23, 2009

UNBEARABLE

I slept downstairs because the heat upstairs is so unbearable. I went upstairs to the bathroom. Coming down I fell again. Think the heat has caused an extreme lupus flare, but doctors can't do anything about it but call in a prednisone prescription. No cure. So I'm staying downstairs with fans blowing until the heat passes or I can deal with it all. They won't do anything since the air guy told him he did all he could. Truth is the unit is too small to work in this place. It needs to be replaced. Goes out every summer. They need to put insulation in here, too, but won't. They just need to gut this place, repair the wiring, insulate, repair all the problems. Instead they just keep renting out as is and increase the rent. I almost fell through the kitchen floor before they repaired it. Two years ago the bedroom ceiling fell in on me sending me to the hospital with a concussion. When you turn on the shower, most of the water still goes through the faucet end. Windows are painted shut. If I could open them, there are no screens. So mold grows in the bathroom. The pipes broke last month. Three days with no water. Then they broke again the next week.

This is the bad side. The other side once has had some well to do couples and individuals move in. They painted, sanded the floor, and one hired a decorator. None of them stayed more than a year or two because of the condition of living there. It is steaming hot in the summer and freezing in the winter. On the other side the heat is worse because the sun sets on that side of the building.

I've had one bad neighbor live there. She was a drug addict. Had drugs delivered to the door. They made meth there before she moved. Since there is no insulation in the attic, with it being open, the fumes came over here. Was prostituting. Still took the landlord three months to give her an eviction. I had to call the police so many times that I just went to the station and had an officer take it over. You couldn't make up what happened.

I haven't been able to stay upstairs long enough to clean anything so it looks like the dust bunnies have set up housekeeping up there. I go up to get clothes, take a shower, go to the bathroom. My two old cats won't come downstairs. They prefer staying up there in the heat for some reason.

I'm just so sick right now from the flair, the heat, etc. My doctor always tells me stress can cause a damaging flair. I've been through so many over the years that I'm surprised I'm still here. It makes it worse when you don't have any family. I miss them so much even though I was the caregiver. Daddy did do what he could when I was sick. I can't believe it has been thirteen years since he died....he was the last one.

I've had a best friend for over 25 years. If it were not for her, I don't know what I'd do. She makes sure I get to the doctor, hospital tests, pharmacy and grocery. She works full time so I only see her a couple of times a week. Still, she has been the only one to stick by me. You really learn who your friends are when you become chronically ill. And since I'm unable to go to church every week, my church family has forgotten me. Sandy or I call when I go in the hospital and they just put me on a list. I am so amazed at how people here really don't care. Neighbors keep to themselves and barely even wave at you. The only time I see the neighbor who lives in the house next door is when he wants to threaten me when my cat gets out. He hates animals. Sad thing is he is a preacher.

So many times I wish I could go back to Wilmore, KY (http://www.wilmore.org/) where I went to college. I came back here because of mother. Then Daddy and Jr. were sick and died. Wilmore is a small town. Good and kind people. But it would cost so much just to move. People don't realize how expensive moving is just across town....deposits, first and last months rent, deposit to turn on gas, etc. When I totaled up just how much it would cost to move to the place I lived many years ago, it would be $700.00. Just become so hard. I only have basic expenses...rent, electricity, phone, extreme basic cable, 20 medications, and food. Still when you only have $800.00 a month coming in and $450.00 goes to rent, more than half gone.

I really don't know what to do anymore.

Monday, June 22, 2009

SICK FROM THE HEAT

My air died at around noon today. I called the landlord. He's "Out of the country." Turns out he and his wife are on vacation and it is a series of hit and miss calls to find help. Called the cell number and left a message. Called his office. Was told his son had called someone after I left a message. By 5:30 no one had shown up. I called again. His son told me he just called the repair man. I told him I called many hours ago. His excuse was he was busy. I told him I was sick and the heat was making it worse. I also crawled all over him for waiting hours before calling anyone.

So around 6:00 p.m. Mr. Fails shows up. Worked on the unit. I asked him to walk upstairs. He said the temp up there was 102 degrees, but heat always rises and it was the hot spot. I told him it never cools down and the only bathroom in the place is upstairs. I've been sleeping downstairs (not really sleeping). So when the son showed up, he took him upstairs. Mr. Fails said the problem upstairs is because there is no insulation in the ceiling.

I think the son felt guilty because he offered to go get me some oscillating fans. I told him thank you but I had one already. It doesn't help. You'd think they'd finally get a clue and INSULATE the upstairs! Nope.

So I'm still roasting. Even though he repaired something on the unit, the heat remains.

Around 2:00 or so, I passed out from the heat. Big bruise on my right arm. I've never felt so sick. Last month it was broken water pipes. Now the air.

I was so thankful to receive an oscillating fan on Saturday. Just wish it would blow cold air!

If you would send up prayers, I would be so ever grateful.

Saturday, June 20, 2009

Frustration

Today I was so thankful when a friend brought me a big fan. It is so miserably hot in this place. I've been so sick I can't even sleep at night from the heat. I have three fans, but they just blow around the heat. It is hard to make anyone understand this unless they live it every day.

I saw a post from an old college friend on Facebook. His heart is breaking because of a recent divorce separating him from his children. Still, he was so loved and supported by family and friends. We are all going through difficulties in life, but it sure makes a difference when you have someone who loves you. Believe me, I miss this more than anything else! We don't put a value on love until there is no one there to love us or for us to love.

Been thinking about how people don't really listen anymore. If you say you're starving, would you want someone to give you a cookbook? What if you told someone you just didn't want to live anymore? Would receiving a book on SUICIDE PREVENTION be of any help? No. Sometimes I think books are just ways for other people to avoid getting involved in your life. So many missed opportunities to help others as Christ has taught us to do. So many missed opportunities. Seems that no matter how loud you scream, no one hears you.

I'm tired....so very tired...of trying to get someone to listen.

Friday, June 19, 2009

Experience of a Lupus Patient

I've suffered from systemic lupus for 14 years now. Since that time I've developed a great deal more health complications including an aortic thoracic aneurysm located below my heart. It is monitored once a year. Size is 4.6 cm. Must be 5 cm for surgery.

I lost my last family member, my dad, in 1996. Since that time I have been alone in the world. When you don't have any family, you're just lost! I have a best friend who has stuck by me for a long time. Without her, I'd have no one.

I've learned a great deal about people since becoming sick and disabled. People don't care enough about others to reach past their own families. Christians simply talk. Being a Christian myself, I know how important it is to DO something to help others. Talk is cheap and reveals your heart and nature. Lack of action kills the soul.

The people where I live are more concerned with their status in society and judging others who don't live up to their goals. Little do they realize that all it would take is one illness to wipe them out. No one is safe from illness and death.

I'm thankful my faith does not lie in people. If it did, I would have died a long time ago.

The desire of my heart is to move back to Wilmore, KY, the one place where I was loved and encouraged, where my life did make a difference. No judgement for illness. No concern for society placement. Short of winning Publishers Clearing House, I don't know how to reach that goal. I do know my health would improve greatly if I could.

If you are out in the world, be thankful for those you work with, those who need you, family members who love you. Without any of these things, life is very very difficult.

Wednesday, June 17, 2009

ANOTHER Stressful day

It is so hot here that I can't breathe when I go upstairs even with the air running. Triple digit temps. Triple heat index. I can't bear living in this place anymore. Freezing in the winter and hot in the summer. The air unit isn't large enough to handle two stories. The best thing that could happen is to mow this building over because of the terrible shape it is in.

I can't afford to run the air all of the time and it worries me. The heat is making me terribly sick.

It hurts me to know if something happens, no one will know. One person checks on me. One. When she can't, I don't see another soul. My soul is dying from living in this prison.

If dreams still come true I wish I could move back to Wilmore, KY. Four seasons. Breathable air. Chance for a life that does not involve four empty walls. Costs money. I don't have any. I can't even afford to move out of this delapidated place.

Today I received a prayer request from the chain I am on. A girl committed suicide and prayer was being asked for the family.

I've wondered myself if it is worth living anymore. I can understand. Family left behind keep asking what they didn't hear. Problem is someone who is hurting screams help, but people just don't care anymore. Why don't others care anymore?

God Help me!

Tuesday, June 9, 2009

Preparing for ANOTHER Hospital Test

Knowing I have to go back to outpatient on Wednesday morning, I have to REMIND myself constantly. One of the biggest problems of my lupus is memory loss. So I'm off at 8:15 a.m. for another test for my intestinal tract. Hopefully this one won't be so bad.

I woke up this morning with "Fairest Lord Jesus" on my mind. Feels so good to sing again! Just fills you up. I was praying for others in my dream before I woke up. That, too, filled me with joy.

So many things I take for granted. I don't want my life to end without making a difference no matter how small it may be.

Saturday, June 6, 2009

A Very Bad Lupus Day

It has been a very bad lupus flare day. I woke up, fed the cats and have been stuck in bed all day. Can't walk well. Can't think well. SO tired, but it is the kind of tired that makes you feel wrung out.

So many positive people in the world say God has a purpose for each life. I believe that, too. I just can't believe His purpose is for me to be so sick and so alone through it all.

Today I wish I had someone to take care of me.

Thursday, June 4, 2009

Doctors again

On to doctor number 2 today. Thankful it is cooler outside due to the rain.

Stress and Lupus Flares

I saw my doctor yesterday under FULL lupus flare. She told me to be extremely careful with the stress I am under as the lupus will flare more and cause much damage. I told her about everything going on and she didn't know how to advise. I told her I'm stuck unless a huge financial blessing lands in my lap so that I can move.

And yes the stress is horrible. And yes the Flare is BAD. Fevers, swelling, extreme fatigue...to say the least. Have had a hard time breathing. If my landlord is trying to kill me, it is working.
I hate feeling hopeless, but when you have NO family to run to for help, where do you go?

I'm to the point I just want to say "I GIVE UP!"

Sunday, May 31, 2009

Add MORE....

It is bad enough that I contacted the landlord EARLY this morning about the pipes. NO water still at 10:10 p.m. But tonight I opened the door to step onto the porch and was literally washed in tree roaches! They were EVERYWHERE! They're in the woodwork outside. I've never seen such a black porch!

HELP!

I can't Take it ANYMORE!

Today I awoke to another broken pipe incident. This has happened now three times in less than a month. When it happens, I have to turn off the water because I can't afford to pay the water bill.
First time it happened the landlord took 2 1/2 hours before someone showed up to turn off the water. Ridiculous!

The second time I didn't have water for three days because he took his time sending someone to fix the pipes. Now I'm back to square one....waiting for a plumber he "called".

I need to get out of this place before the stress kills me. I overlooked the ceiling falling in on me a couple of years ago and sending me to the ER. I've dealt with the roaches, kitchen floor caving in, bathroom floor caving in. I just can't deal with it anymore.

The cost to move to a new place with deposits and all would be $700.00. Who has that??? I don't. Most of my money goes to medications for lupus plus.

How I wish for a miracle!

Tuesday, May 26, 2009

The EXTREME cost of Living with Lupus

I've had lupus for 14 yrs now and the expense and grow so much over the years. Medications, medical bills, etc. are to the point of overwhelming.

All of my family passed away by 1996 and I've been on my own since then. It makes a huge difference to have the support and encouragement of family when you're sick especially when the only time you get out is to go to doctors and hospitals. Can you imagine a day when you don't speak to another person or even see a person? Try being sick. Makes it worse.

Sometimes I just wish I could get out of the place where I'm living. I didn't have water for three days, the bedroom ceiling fell in on me a couple of years ago, the wiring is so bad that one side can't wash clothes while the other side does. My kitchen light is now shorting out. The windows are all painted shut. If a fire broke out while I was asleep upstairs I'd be in such trouble!

When the power goes out, can't raise a window for air. Neighbors don't care about anyone on the street. I do believe if I passed out in the front yard it would be hours before anyone noticed.

How I wish I could live in the country again! Actually have a home, a house. I know I will never be able to afford a house because of the mound of medical expenses, but know just having a house of my own and living in the country would benefit my health so much.

How I wish for a wish to come true!

Another Rainy Day

When it rains, it hurts...literally! When you have lupus any weather change just brings out the physical pain. When it rains, I can't breathe well. My day is gone. I can't function at all. The only good part of rainy days here include cooling down the temp and I sleep a great deal.

It is a rainy day and I cannot function mentally or physically.

Monday, May 25, 2009

Remembering my Dad



My father, Elbert W. Calhoun, Sr., fought in WW11. He fought almost four years. During that time he married my mom.

My dad died in April 1996 and I've missed him terribly ever since. He may not have been an educated man, but he was a hard worker, good man, content with what he had.

1942
3 Jul
Age: 20

Military

Ft. McClellan, AL

Description: Induction into Army - WW II

1944
4 May
Age: 22
1946
25 Feb
Age: 24

Military

Ft. McPherson, GA

Description: Honorable Discharge - Army - WW II

Friday, May 22, 2009

MEETING KEVIN SPACEY


Meeting Kevin Spacey in NY "Iceman Cometh"

I met Kevin Spacey on July 3,1999 in NYC after "The Iceman Cometh" on Broadway, my first and only Broadway play. We finally got tickets for my best friend and me to go see the play, "The Iceman Cometh." Let me say right now without her help this dream would never have come true. I ADORE Kevin. He's the one man who can walk into a room and literally take my breath away! We went to NY, saw the play, stood at the back of the crowd and came home the next day. I move up a few people and he leaned over my left shoulder to sign a photo. His face was two inches from mine. I nearly died. We arrived back home that Sunday and there was a message on my answering machine, "Kevin Spacey would like for you to come backstage to meet him after the play". Message was left Friday. I got it on Sunday. I live alone. There was no one home to call me and relay the message. I cried and cried as my best friend just stood there saying, "Unbelieveable!" I had forgotten I had written a letter to the theater to see where the actors would come out for autographs. It was important that I not be exposed to the heat or if I could get there for the matinee, not be exposed to sun as it activates lupus. I had written only to inquire about the location. I told them why I needed to know as I was sick and couldn't endure the heat. The letter was passed on to Kevin. After pulling myself together from missing a wonderful opportunity, I called his assistant back and asked if we could do this again the next weekend. So my friend and I flew back to NY the following Friday. By then I was really sick from a lupus flare and the heat and travel caused me to swell and have to use my cane to walk. I had two braces on my knees because the joints had become swollen and it was hard to walk. My meds had added weight to me and my face. I felt like an ugly duckling and was so afraid he would have that ever familiar look of fear I've seen on other people's faces, the look of "oh she's sick, don't touch". We went to the theater around 10:30 p.m. to stand near the door. When we arrived we saw Kevin looking out the door. I was terrified as it really surprised me. I tried to talk my friend into portraying me for the moment because I looked so horrible from the illness and meds. I was terrified he would walk into the room and would turn away from the sickly site of me. The man at the door said, "Oh, we've been waiting for you" and said Kevin had just looked out the back door to see if we had arrived yet. Then I was scared. We sat in the green room listening to him give his final speech over the intercom and then he walked to the back door past us. I almost fainted. He stopped in the door and said, "Mary?" and I went deaf. I stood up, he hugged me, and we had a photo taken. Then we spent fifteen minutes with Kevin talking about life, the play, his plans later after the play, my life. He was so compassionate and understanding, hugged me twice and never once looked at me like I was a sick pathetic soul. I actually felt like Cinderella. Before he had to go back onstage for bows, he took my hand in his and covered it with the other, held it a moment and kissed my hand and thanked me for coming all the way back from S. Alabama just to meet him. And yes, ladies, he has the most beautiful brown eyes and his hands are so large and so very soft! I found out also that the week before he sent someone into the crowd to look for me and couldn't find me anywhere.He also left a message for me at the box office. We had tickets already so didn't need to stop by the box office. He went to great lengths for this to happen to me. I have only one regret. My friend says I'm silly, but he asked what we were doing on Sunday before leaving for home that evening. We said we were going to the museum. He said he hadn't been to the museum in a long long time. Normally, I would have said, "Come go with us", but I didn't because of whom he was. Now I regret at least not saying it....why didn't I say it? It was indeed one of the most beautiful moments of my life and I will treasure it always. I think about it when I go for medical tests for my lupus, or am in the emergency room or hospital. That memory is my positive thought. I'll never be able to repay him for what he did for me that day. He has a wonderfully big heart, is extremely intelligent, and is so very compassionate. Someone asked how I got the photo signed. This didn't happen till almost three years later. A friend of mine's aunt played bridge with Kevin's mom. The aunt told her my story and how I forgot to get an autograph when backstage. Mrs. Fowler told me to send it to her and she'd take care of it. I sent it, a letter to her, and a SASE envelope to return it in. About eight months later, the photo arrived back to me autographed and sent back from Kevin. So I guess this story was a Trilogy of sorts.

My OTHER Website diary

I have two other websites about living with Lupus:

MY DIARY:

http://www.angelfire.com/bug/helpmary/DIARY/


and

Mary's Page: About Systemic Lupus:

http://www.webspawner.com/users/maryjc83/index.html

Rainy Day

The rain has poured here today. Along with the rain comes the pain! Lupus is a horrible disease. I feel like an elephant is sitting on my chest. Can't breathe! Can't function. My life has become so limited because of its progression.

It is even harder when you're alone with NO family left. My mom, dad and brother all passed away. I'm dealing with this on my own most of the time. My best friend is the only support I have. How I wish for good things....the clouds hover way too much these days.

I'm overwhelmed with medical debt. Sit in the dark a great deal to control the electric bill. It comes down to money for meds or food by the end of the month. Twenty meds are ridiculous for one 48 year old woman!

Just wishing today for something good to come my way. Just drowning.

Thursday, May 21, 2009

Another Stress Filled Week

It has been a horrible week! My pipes burst under my place. This was twice in two weeks. I luckily was able to turn off the water. The first time it happened, the landlord didn't send anyone to turn it off for 2 1/2 hours.

Still lived up to his reputation. I was without water for two days before anyone showed up to repair the pipes.

This place is falling apart. How I wish I could afford to move! It would take $700 for deposits for me to be able to move. I need a financial miracle!

I've been in bed sick ever since this stress hit. Always sets off a lupus flare. So tired of this!