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!"