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!


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.

3 Jul
Age: 20


Ft. McClellan, AL

Description: Induction into Army - WW II

4 May
Age: 22
25 Feb
Age: 24


Ft. McPherson, GA

Description: Honorable Discharge - Army - WW II

Friday, May 22, 2009


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:



Mary's Page: About Systemic Lupus:

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!