Thursday, September 23, 2010

Where is Fall???

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

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

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

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

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

Thursday, September 16, 2010

Lupus Day

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

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

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

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

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

Thursday, September 9, 2010

Before I die

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

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

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

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

Me, too!

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

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

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

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

Flowers Hospital...again

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

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

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

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

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

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

That's all I wanted in the first place.

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