Wednesday, December 28, 2011

Chasing Pharmacists

If I EVER win the lottery, or come in to some outrageous amount of money, I will dump all doctors, move to the safest, remote place in the world, and let someone else deal with pharmacies! Last week I called in my prescriptions. Unfortunately, with lupus you have a ton of medications as the illness progresses. Since I fill my pill dispenser once a week (divided by the day, by the week), I didn't notice until tonight that one medication had the wrong doctor on the bottle AGAIN. You see, this pharmacy had once taken the first name of one doctor and the last of another and created a whole new doctor's name just a year ago. Tonight I saw where they had the WRONG doctor's name on one of my meds that I've taken for years. This med has been prescribed by my rheumatologist. Instead, they had the name of a doctor I saw once this past summer for a car accident. Top it off with the fact they had given me half of the prescription.

I call the pharmacy and asked to speak to the pharmacist.

"You sent my refill to the wrong doctor."

"Oh no. This one was on file so we filled it instead. Your other doctor didn't respond to the refill request last week."

" I never had a prescription for this med from this doctor. Besides, you were suppose to get a refill from the doctor who prescribes this med."

"Well, we thought it better to give you some med than nothing. This one was on file by computer."

"Take this doctor's prescriptions off. My rheumatologist has prescribed this med for years. There should be no confusion. Now I have half the medication for the month thanks to your helpfulness."

"Oh it is enough for ten days."

"Why didn't you resend the request? Sometimes your computer requests don't go through. They always respond. In fact, WHY didn't you bother to contact me? You never contact me when a doctor doesn't respond to a refill request."

"You have a prescription so we didn't bother. Would you like me to send another request?"

"Yes....you should have done this already."

Now I have to call in the morning to make sure this is done, something the pharmacy should have done on their own. Two weeks ago I called my doctor's office to ask for a refill to be called in a week early on my cholesterol medication. I have a thoracic aortic aneurysm (aneurysm growing just below my heart) and the medication is suppose to help it somehow. It being so close to Christmas and this pharmacy having such a bad reputation of not complying with refills, I didn't want to take a chance. I called the office, left a message, and knew they would take care of it. When stopping by on Wednesday to pick up the medication, none was filled. I called the next day.

"Did my doctor's office call in a prescription for my med?"
"Yes, they did on Monday. Oh, would you like us to fill it??"
"Yes, that's why they called it in."

WHY ON EARTH would anyone CHOOSE to be sick? Want to be disabled? Want to have to take these stupid pills??? From the sound of it, the pharmacists have been dipping into their own stash.

And to make matters worse, never ever have I been given an "I'm sorry for the misunderstandings" or an "I'm sorry" in general. Add to it this part: I have to deal with the stress of it all by myself. I can't pick up the phone and ask anyone to take care of this for me because there is no one to do it. I can't pick up the phone and ask someone to listen to me rant and rave because there isn't anyone to listen.

If you are healthy, CELEBRATE! Be thankful for every healthy moment. As the New Year approaches and you can't think of anything to be thankful for, be thankful you don't have to deal with illness, meds, and insane pharmacies!

Saturday, December 24, 2011

Christmas Eve

I was talking with a neighbor tonight simply by accident. I looked out the window when I saw her crouched down on her knees beside a neighbor's vehicle. Thinking she had fallen, I walked with my trusty cane outside to see if she was okay. Her dog's leash was caught on something underneath the vehicle and she was simply untangling it. We both laughed and I was glad she was not hurt in any way. We stood outside talking. I learned a great deal about the neighbors who lived around me, too much I'm afraid. Sometimes it is best to be ignorant. The one bit of information that always upsets me the most is knowing the person who is in charge of this place has no care of anything or anyone who lives here. What a wonderful opportunity with so many Senior adults here! What a huge opportunity to make a difference in their lives! Instead she is so absorbed in herself that she can't "see past her nose to spite her face..." as my mother always said.

My neighbor is a loving, caring soul. She was blessed ten fold with the compassion so many have lost. It angers her, too, to see so many ignored, those with families who don't take the time to care about their aging parents, those who are alone, sick, who have to call an ambulance to take them to the hospital because their own children don't have the time.

This has become a terribly cold world we live in. No only do neighbors not know each other, they don't care anymore. It is a rare gift to find someone who does. She is a rare gift and I hope somewhere out there in this world tonight there will be another caring soul who will reach out to someone who is alone. I can tell you from first hand experience, Christmas magnifies the loneliness, the deaths of family members, the silence. Time is free. So is love.

Thursday, December 15, 2011

So Restless

I am not a fan of this time of year. So geared toward families. Magnifies the loneliness I feel and the loss I feel of my own family. I try to remember the purpose of Christmas is to celebrate the birth of Jesus, but my heart swells up with the memories of my own family and missing them so much. Friends take time off to be with their families which means I'm alone more. The silence is magnified.

Today has not been a good day. Weather keeps going from 40's - 75. NOT feeling like Christmas. It also beats up my body so badly. My lupus has hit a high flare. I'm restless, in extreme pain, and can do nothing about it. Sleep doesn't come. So tired of being alone.

Will 2012 be any better? I'm not talking about politics. I'm talking about changes, GOOD changes. Open doors. Blessings. A safe place to live...FINALLY. Oh how thankful I would be for a safe place to live! I've been trapped inside this tiny apartment for almost three years. How I miss being able to take a walk outside, get fresh air, dig in the dirt.

Faith...believing in what is not seen.

Saturday, December 10, 2011

All I want for Christmas...

I've never been one for presents. The only need I have is for a home in a safe place, a quiet place, where I can write again, where I can sleep in peace. All I need for Christmas is a home.

Sunday, November 20, 2011

Review

Okay, let's review this year. I've been in and out of the ER, involved in a car accident in June that permanently injured my upper back and neck (thanks, it was the one area I didn't have problems with), fought the other guy's car insurance company for months only to be insulted by their representatives, who by the way are rude, obnoxious people who could care less. NEVER USE GEICO! They pour your insurance money into stupid commercials. When it comes time to pay for hospital bills on injuries you caused by neglect while driving, they put you through hell for months only to cover the bare bills. The pain and suffering caused by Geigo is doubled by their unprofessional behavior.

FOX NEWS or another news channel should do an investigation on these people.

The past two months I've not gone outside my door except to leave. There has been the following:
1. Domestic fight over a baby outside my door.
2. Robbery of a vehicle beside my apartment.
3. Shooting outside my living room window.
4. Constant fighting from a neighbor's apartment.

The past two years have felt like prison here and it has really affected my health. The stress, overwhelming war zone outside my window, and fear of having nowhere to go is literally killing me. My lupus and all the other illnesses that have flared from it have been overactive this year. If I don't get out of here into a place that is quiet and SAFE, I won't be here another year.

So if I had a miracle right now, it would be for a house in a safe quiet place and if it could be away from Alabama, all the better.

Right now I feel like I'm going to just explode from all the stress. God help me.

Tuesday, November 1, 2011

God help me...

Thursday, October 13, 2011

Free Stuff or Get Rid of Stuff

Auctions for free stuff at Listia.com

This is a great site to get free stuff or get rid of stuff you don't want anymore.

Tuesday, October 11, 2011

TOO CLOSE TO HOME!

http://www.rickeystokesnews.com/article.php/updated-954-pm-breaking-news-two-people-shot-at-park-and-fortner-street-22092

This happened outside my window. SO DESPERATE to move from here!! Please help!

Monday, September 26, 2011

Physical Therapy

Finished Physical therapy, but not because I'm better. It is because the six weeks is over. The Physician's Assistant didn't even touch me, much less come close to me. Just asked questions and filled out a form. At least I have the TENS unit with the heating pad. I can tell the pain and stiffness is back. I know I'll always have pain, but it would have been nice to have been given two more weeks. I just have to be faithful to work it out every day.

The only good thing is not getting out in this heat three times a week. It was 91 today. Gosh how I hate this horrible heat and it really hates me. I've been more sick this summer than I have any other summers before.

Just taking one day at a time...

This is Sad!



When the only thing you have to look forward to every day is the mail, it is ashame when the mail deliverers are stealing it!

http://blog.al.com/spotnews/2011/09/theft_mail_destruction_prosecu.html

Monday, August 15, 2011

Some Relief

Started physical therapy last week. Today was day four. Doing the electrical stimulation, heat, massage. Today did traction to try and rid myself of the nerve damage going down my right arm into wrist and fingers. Hurts! Didn't realize how bad my neck was until I started physical therapy! Could barely move it from side to side. Moving better, but the pain is still there! Will be going for awhile. Did more damage in the accident than I realized.

The heat is still bad here. Getting out during the hottest times and doing it often to go to therapy made me terribly sick this weekend. Was in bed most of it. Still can't function well. Will be so Thankful when this heat has passed on. It will be late October before it goes.

Can't sit here long today. The pain has been awakened from therapy. Heading to a warm shower.

Saturday, August 6, 2011

STILL In Pain!

Doctor run this week. Eye exam. Same old stuff. Still having a hard time reading a book, watching tv, etc. Have to get new glasses. Can't afford to get new glasses. Have to rely on listening for awhile.

Saw a new doctor/old doctor this week. Pain is still as bad as it was when the car accident occurred on June 11th. I'm heading to physical therapy on Tuesday. Praying this will help. If it doesn't, I go for an epidural to ease the pain. Would love to be able to sleep more than two hours a night. I wake up with spasms in my neck and upper back.

The pain has caused lupus flares. Last week had a fever of 101 again. Just makes me feel so overwhelmed. Actually, the past few years feel so overwhelming.

Wednesday, July 27, 2011

What Happened?

What happened to making a difference in the lives around you? If you have more, more is expected. If you have the means to help someone, make a difference, do it. Makes me sick that there are so many people in the world with opportunities to make a huge difference in this world and they don't take it. What must God think when someone passes judgement on someone instead of buying someone food who is hungry? What must God think when someone needs someone to care about them and guide them and they say "who has the time?" What must God think when people avoid others who are sick and alone? It doesn't cost a dime to smile and hug someone. I love you is free.

What has happened to this world? It seems those who are so abundantly blessed don't want to be a vessel to bless those who need help. They say, "God will help you if you ask Him." Has it occured to them that maybe He sent THEM to help them?

A friend of mine told me the story about her encounter of a lady who was hungry. She didn't look like those at school, was hungry, etc. She showed her love and respect, but the college official told her to stop hanging around her because she was white trash. The friend gave her love and bought her food. Which person do you think God smiled on that day? I wonder if the official would have kicked Jesus off campus that day?

How I wish there were more pure hearts like the friend I spoke of above.

Still Suffering

Still suffering from the car accident. Pain in the base of my skull, neck and upper shoulders keep me from sleeping. The severe pain prevents me from turning my head. The pain has caused multiple lupus flares. Prednisone was prescribed for me to get control of the 102 degree fevers caused by the flares caused by the accident. Bills....still coming. Geico should be ashamed of themselves for being so irresponsible. I was just a passenger in a car hit by another. It was the other person's fault. Their insured passenger. The stress from your representative caused more undue problems than I needed. Add it all together. Take responsibility.

I'm still sick. Now add the worry of the government trying to cut Social Security, my only income. So tell me....how do I live? This is not a Political game. This is about people who are suffering. This is not about spending money. This is about a living, and barely one at that.

Mr. Speaker and President, I am so disappointed in you. I watched the Fox News interview this afternoon. It disheartens me to know you are fighting so hard to cut Medicare, Medicaid and Social security. Your focus is "on the American people and what is best for them." Mr. Speaker, you are not. I am an American. I was born here. I worked from the time I was 14 yrs. old until an illness stole my physical ability to work. That illness is not covered by any insurance companies because there is no cure for it nor any specific medication designed to treat it. After I was taken to the ER near death, I was forced to make a decision: live or die. I could continue to work and die the next time they brought me in the ER if I was lucky to make it or let the doctor fill out the paperwork for disability. I chose to live. And it has NOT been an easy road.

Now let's look at the pharmaceutical companies. The medications are astronomically priced. For two years I paid ALL of my medical bills and medications. Sent me into bankruptcy. Wiped out all of the savings I had from working. Took my home. I had to use credit cards to pay the $1500 a month medication refills. Medicare Part D was a God send to me. If you cut it, I won't be able to take any of those horribly priced medications. Will you do anything about the pharmaceutical companies? I don't think so.

Will you change any of the insurance companies? If you do, it won't matter because if you cut Social Security, I won't be able to afford to pay a premium. You see, $800 a month only goes so far.
$410.00 for Rent
$80.00 for electricity (I live in the deep south)
$30.00 for gas (hot water heater)
$20.00 for a land line phone (in case I need to call an ambulance) I am housebound. No I don't have a cell phone.
$75.00 for food
$ 25.00 for life insurance policy and Medicare Part D policy
$ 160.00 in medication. - Sometimes more money comes out of food because I have new medications.

If you decide to cut Social Security, HOW do I pay the NEEDS I have above? Any suggestions would be helpful. Keep in mind all of my family has died. I'm alone in the world and have no other person to turn to for help.

What about all of the seniors and disabled in this country who LIVE on Social Security? WE are Americans. Look out for OUR best interests. I am sure you can find a TON of Obama's wasteful spending to cut including the money sent over to other countries. I was always taught to take care of your own first. What happened to that? I was also taught the decisions you make have consequences no matter how big or small. We all answer to those decisions one day. Remember all of the lives that rest on yours.

Saturday, July 16, 2011

What Am I Suppose to Do?

Mr. President -

While you and your politicians Play for power, how I am suppose to pay for my rent, electric bill, phone, medication and food on August 3rd? I am not a number. I am a person. I have no family member to run to for help while you play powerful politician instead of doing the job at hand. Why are you holding Social Security and Medicare on a chopping block when you are giving money away to other countries, throwing money away on projects that have no importance to all of the country, and instead will hurt people who have no other way to get medical care, medications, or pay for the bare necessities of life? These are not welfare programs.These are programs I paid into all the years I worked until I became so sick I couldn't work anymore. Where is your heart? Do you hear anymore?

I heard on the news today people are giving money to the woman accused of killing her own baby. But since a jury decided to set her free and since some people decided this jury must know what they are doing and it must be true, they are giving money to this woman to start over while so many people are suffering. People are out of work. Children are going to bed hungry at night. But this woman will have thousands of dollars to start over thanks to those who want to prove a point. Is there any common sense left in this country anymore? Is there any GOOD left?

Please stop playing around and remember we are NOT numbers to cut. We are people. Social Security is not spending money. It is paying for shelter, food, medication, utilities. Please do not put us in a position where we will be out on the streets because you wanted to stand in the limelight.

And if someone can show me there is any good left in the world, please do.

Thursday, July 14, 2011

Taking a Step at a Time

In a perfect world, the person whose fault it was would have an insurance company that would gather up all of the medical bills, pay them, and you would have no stress from the incident. As we all know, this is not a perfect world as we were both made aware of two weeks after the accident. No one had called us, sent us anything in the mail, etc. We both had to call and chase down the representative in order to find out what we were suppose to do. Instead of a person, we would get voice mail. Frustration and aggravation has really been a strong suit in this situation. Now the medical bills are rolling in and rolling right onto our doorsteps. In order for us to keep them out of collections, we have to pay while the insurance company drags its feet. Not fair. How do you get blood from a turnip? MORE Stress.

We are both still suffering severe pain and having to see doctors for this incident. With the stress being so bad, my lupus has flared repeatedly causing fever after fever, joint swelling, and just plain sickness. I had to move my lupus appointment up because I just couldn't stand the fevers anymore. The trauma of the accident set off flares. Pain from the accident keeps me awake. It is a cycle. Add worry about the incoming bills we shouldn't have to be concerned about in the first place because it was the other guy's fault.

I'm asking for your prayers....please pray for Sandy and myself and that this situation will be rectified, bills paid and stress gone. Pray for healing. Pray for ways for us to meet the bills until all of this is said and done.

I ask for a special prayer for Sandy. Last week her dad died. He had been sick for awhile, but had still been active. He had a slight heart attack, was taken to the ER, admitted to the hospital. The cardiologist did a heart cath to insert a stent when he threw a blood clot. As you know when someone passes, life becomes chaotic until everyone goes home. It is the quiet after the storm that is the hardest time of all. Please remember her and her family as they grieve the loss of their father.

Tuesday, June 21, 2011

Mary Kay Andrews Book signing

Spent Monday at the book signing for Mary Kay Andrews' new book SUMMER RENTAL in Newnan, GA. Was a good trip. Fun! Finally! Something GOOD! Has been such a horrible few months. This was a quiet, laid back southern town. It was peaceful. Ate lunch in a small restaurant and wandered through an antique store before the book signing. People were so nice and friendly. Was a nice break from this area.

Tuesday, June 14, 2011

Dear Ambulance Service

Dear Ambulance Service

I was thankful for the care your ambulance caregivers gave to me. However, you might want to remind them of three things:

1. When a patient is strapped down to a back board with a neck collar and has a medication list in her purse and cannot get to it, it is better to call the medic alert number on her bracelet that she asked him to call in order to have the medications listed by the time we arrive at the ER especially when she has a long list of medications and a list of other health issues. Otherwise, what was the point of having the Medic Alert bracelet???

2. It is not professional or compassionate to pass your cell phone over the patient to show your co-worker photos of a project you are working on outside the job. I was shocked!! If I could have spoken, I would have told them how very tacky that was.

3. When you wheel a patient into the ER (remember the patient is strapped to a back board and in a neck brace) and waiting on a room, don’t hold the heavy board over the patience’s face and make them sign your sheet. She’s probably in excruciating pain from the car accident she was in. That’s just plain insensitive.


Accidents are hard enough. Illness is bad, too, but when you get two people who are suppose to be on top of your care and they are doing the above, it scares you.

Please make sure someone knows this.

Thanks.

Monday, June 13, 2011

HOLY NIGHTMARE ER - CAR WRECK

My friend, Sandy, and I were in a car accident Saturday. We were rear ended. Both of us ended up in the ER. She had a neck injury and is still in great pain. My head snapped backwards hitting the headrest. I was taken by ambulance strapped to a back board and in a neck brace. Was strapped to the board for several hours.

While in the ambulance, the guy asked me for my med list. I told him it was in my purse, but I had a medic alert bracelet and he needed to call the number for the long list of meds I'm on. He said they'd wait till we arrived in the ER. Then the other guy passed him his phone so that he could look at the photos of his car, the one he was fixing up on the weekend. NOT professional!! Not appropriate!!

It was a bad experience at the hospital for many hours. After the ambulance guy wheeled me in, he handed me the heavy chart to sign. Since I was in a neck brace and on a back board, he had to hold it above my head for me to sign. I thought it was very uncompassionate due to timing. After being taken into a room, I was asked multiple questions of which were hard to answer when your teeth are jarred together with a brace. Remember, there was no one in there with me since Sandy was also in line to be treated. I was alone. The ambulance guy asked if I had a list of meds and I told him the list was in my purse. My purse was sitting on my stomach. I couldn't get to it. He said, "We'll worry about it when we get to the ER." I told him I had a medic alert bracelet and asked him to call the number because I was taking many meds and had multiple health conditions. He didn't.

When I was taken into the room, the nurse asked the same questions about conditions and meds. I told her the same thing. She said she would wait till later. I told her to call the medic alert number. I also told her my medical records were at that hospital. She said she would pull them up, but sometimes not all of them would come up. She left. The nurse call button was left hanging on the wall. I was strapped down to a back board and was in a neck brace. I was also left there by myself for over an hour. The pain increased so badly I was shaking all over. I've never felt pain that badly before.

Sandy was finally put in a room and came back to check on me. She handed me the call button. Her sister, sister's friend and mom had arrived and were in her room. When she went back to her room, I hit the call button asking why I had just been left. I asked for something for the pain. One more hour later, someone came in to take me to catscan. By then Sandy's mom came in to sit with me.

Another experience......the catscan room. To move me over to the scanning table, they just yanked me over hitting the table with a huge bang. Already in a great deal of pain, I just screamed! Doesn't anyone in this hospital teach compassion to patients??? Then they did scans to my head and neck. That took forever because they would pause and let me sit. The table would jerk up and down causing more pain to run down my spine. At that point I lost all feeling in my upper thighs. I was crying by the time it was over. Another woman joined the fun to pull me off the table and back onto the bed. She said sarcastically, "This will hurt!" I told her I was in excruciating pain. She just jerked me onto the bed like I was a moving box. My body was one huge muscle spasm and I just cried. She leaned over me and said, "You can breathe now." If I could, I would have slapped her. Sometimes I think someone should start a column entitled "What an Idiot!" It would be filled with many hospital ER employees from this area!

When I was returned to the room, I noticed I was leaning to the left side of the bed. If the rail had not been up, I would had slid right off. Put more pressure on the left side of my spine and by then the left side of my body was numb. So more hours passed with me strapped to the board and my neck in a brace. And I cried. Sandy's mom stayed in my room for a few minutes and then back to hers. I just cried.

After four hours of agonizing pain, I hit the nurse button again and asked about something for the pain. I had been brought in by ambulance from a car accident. I did not walk in with a stubbed toe or a bad cold. I did not twist my ankle. Yet, they treated me the same. They just left me in the room to suffer. The doctor had already said I could have something for pain. Four hours later, nothing. I was still shaking hard from the severity of the pain. Oh yeah, no one ever put a sheet over me. No one asked me if I was cold. No one checked to see if I was okay. Now add to it the fact I have chronic illnesses, am on many medications, and have an aneurysm just below my heart that could burst in a situation like this.

I learned this huge lesson: If you end up in an accident of any kind and have to go on a back board and a neck collar, make sure you are unconscious. You'll be able to endure the negligence much better.

Next was the x-ray. The lady was the most compassionate. She was gentle and kind. Problem was I was still strapped to the board. She had to come back. I told her I had been abandoned for hours. No nurse no one. She said she would make sure someone checked on me. She came back an hour later to take me down. Ten minutes before she returned, they freed me from that board. I never thought that ER bed would feel so good. They finally gave me a pain shot. Its affects lasted ten minutes. The pain was just too bad and too long lasting.

After five hours, tests showed no internal damage, but the pain is still excruciating. But since the tests showed no tears or breaks, they were done. They brought in prescriptions and papers and sent me out the door. When I was sitting in Sandy's room, I looked at the prescriptions. One was for a med I already take. I realized they never ever checked my medication list before they gave me new prescriptions. All those times I tried to get them to call my medic alert, they wouldn't. I told them I had a med list in my purse, but because I couldn't get it, they didn't have sense to ask Sandy's mom or someone else, they just didn't bother to check it. So I decided to call them on it. I stood up for myself. The Nurse in charge came to the room and I told her about the medicine list. She checked my chart, came back and said, "well, ma'am, that is the only other med he could give you." I told her it wasn't my fault he didn't bother to check my medications before he prescribed. At that point it was the SAFETY of the matter.

If I had come in there unconscious, they don't check for a list, they don't bother to call my medic alert, put whatever meds in my system, cause me to have a stroke, and I have the unfortunate circumstance of having to live with it, that is not acceptable. If I don't make an issue of it while I am alert, what will happen if and when I go in when I cannot answer their questions? I wonder how many other patients have had the same thing happen?? Scares me to death. That is negligence.

Pain is some better today than Saturday. I can feel the severe pain in my neck and going down my back in my spine. Have a doctor's appointment on Thursday to check it to make sure no damage was done since ER doctor did not check it.

Sandy's car is parked. We're waiting on the accident report to see what insurance will cover. Would greatly appreciate any and all prayers!

Tuesday, June 7, 2011

HOT AND RISING

Heat is here to stay and it appears the extreme drought is also. Only a pop up shower has appeared. It happened last Friday night and lasted ten minutes. No rain for over six weeks. The heat is oppressive. Has been over 100 degrees for over a month. Was 104 degrees last week. Most of my time is trapped inside. When I step out to water my plants, I almost pass out from breathing in the fumes.

My crazy cat begs for me to open the door just a crack so that he can have fresh air. So I accomodate him for a few minutes. I stand there for safety sake. He loves it. I don't. If I don't accomodate, I hear his unnerving siamese meow. He's so bossy. But since Rascal is my one companion, my faithful friend, the only one who has been there for me, non-judgemental through all the struggles I've faced, pain I've endured, tears I've cried, I know he'd do anything to help me if he could. Unlike human beings who tend to do things for others if it benefits them in some way, animals are different. They have that unconditional love God instilled in them. If only man could learn that kind of love.

It gets lonely sometimes without family or friends, but knowing God sent me a crazy, cranky old cat like Rascal helps me get out of bed. On days when I cannot get out of bed, he just curls up beside me and loves his unconditional love. Somehow it makes life a little better. The worry of how I will pay my electric bill isn't as bad. The loneliness isn't as bad. The enduring love is a reminder God is still there.

The heat has trapped me once again, but at least He has given me a fine friend.

Friday, May 27, 2011

Out of Here

The heat is overwhelming here. I can't breathe. It literally makes me sick. Although some with this horrible disease have a hard time in the winter, I have a hard time in the summer. It has been extremely HOT and humid and severely dry (drought) for a month already and the summer will only get worse. The heat is making me ill.

I stay inside unless I leave to go away from this complex. On Thursday afternoon I had to step outside to tell a bunch of obnoxious kids to stop hanging around my door. One ten year old started yelling at me. Of course I couldn't let it go. I called him down, informed him I was an adult and he would NOT speak to me that way. After I raked him over the coals and taught him some manners, I went back inside. When I sat down, I realized the heat and stress caused chest pains. They went on for hours. This is ridiculous.

I spent two hours in the doctor's office Wednesday. She came in and spent five minutes with me asking what has been going on. I caught her up on the ER. She said, "That's not good." Proceeds to listen to my heart and lungs. Writes on the chart and leaves. I go home swollen from sitting, in pain for two days from the swelling of my joints, and just wishing I had somewhere else to go.

I am still bothered by my hospital information listing my aneurysm in my abdomen and not under my heart. It has been there almost ten years now and has been checked once a year. The growth is on the edge of 5 cm, the size for surgery. Yet, they have it listed in the WRONG Place.

I'm sick of having to correct hospital records.

I need to get out of here before I die.

Saturday, May 21, 2011

Amazing

I am stunned by the number of people who make fun at the "Apocalypse" predictions of today. Grant it, the man who set the date is a false prophet for in the Bible it says that NO man knows the time or day, not the angels, or the son, but the Father. So why would he tell a mere human? The odd thing is it could happen today as much as tomorrow. So instead of making fun of it, shouldn't we all prepare for His coming? There will be no missing it. He will bring Heaven's angels with him, trumpet blasting, so there will be no missing this one. The only problem I have is that there are so many false prophets out there "watering down" the coming of Jesus that so many decide it isn't going to happen and just make fun of it.
I am also amazed that so many people easily follow false prophets instead of just opening their Bibles and finding out for themselves. If they cannot understand what it is saying, ask someone. Technology has now made it so much easier to find the information online.

http://bible.cc/matthew/24-36.htm

New International Version (©1984)
"No one knows about that day or hour, not even the angels in heaven, nor the Son, but only the Father.
New Living Translation (©2007)
"However, no one knows the day or hour when these things will happen, not even the angels in heaven or the Son himself. Only the Father knows.


Mark 13:32 "No one knows about that day or hour, not even the angels in heaven, nor the Son, but only the Father.
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Acts 1:7 He said to them: "It is not for you to know the times or dates the Father has set by his own authority.

So if you are not sure, just type it in and read it here.

I know God must be truly saddened by all the "Apocalypse parties" people are having. I take that as mocking Him. One day those who are mocking instead of preparing will be crying. We do not know the day or hour, but it could be today, tomorrow or next week. The signs of the times surely show it must be close.

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I can't help but wonder how much talk is exchanged with how much "do" in our society. So many people can talk about doing something to make a difference in this world. Going in mass groups to help victims in disasters, or as missionaries to other countries, but what about the people God puts in our lives even though it may be for a short time? What if He put a person in our lives for a moment wanting us to do something to make a REAL difference in that life, to give that life hope, opportunity, options? What if we didn't do it because we had already judged that life as "lazy, hopeless, useless?" How do we answer for NOT doing something when God puts a person in our lives to make some sort of difference even if it is giving them information that might actually turn their lives around?

It angers me to see someone "labeled" lazy because they are standing still not knowing where to turn because no one had ever given them direction in their life. Let's say this person was bossed around from childhood up through her teen years. All she ever knew was how "lazy and sorry" she was. Her self esteem? WHAT self esteem? She has never been taught how to do anything or what direction to go in. She tends to be a follower because no one else has helped her break off into a direction of her own. No one has opened a door for her to lead and she doesn't know how to do it. So she is labeled and her doors are closed. You come into the picture and can possibly help. Instead you sign up to be an oversees missionary helping those in other situations and ignoring the life God put in yours. What does this say to Him? "Ignore her and maybe she will go away." That is the thought. That is the WRONG thought.

It tears me up inside to see a young life with so much to offer put in a box with the lid nailed shut and no one with so much to give not help her. I have always been taught, "Where much is given, much is to be expected." Where is the help for her? Opportunities narrow the older you get. I just want her to have open doors for HER life.

Thursday, May 19, 2011

Falling

Amazing how short a memory can be! As I stood up, I had forgotten to "think" before I walked. Down I went! The nerves are damaged in my feet and legs and I have to think before I take any steps. Not thinking drops me like a hot potato. I guess it can be a good thing when you fall on the knee you have no feeling in anymore. Or can it?

I can't call to Rascal for help. If he were only able to pull me up what a wonderful gift that would be! The only 11 yr. old cat with super powers! So I sat there for a long time nursing what pain I felt. When I finally was able to pull myself up, I dragged myself to the chair near the computer. Better to sit in a chair with wheels for awhile than to try to walk on legs that may be more injured than I can feel.

I wonder. With so many of us falling short of our own goals and expectations, why is it so hard to pull ourselves up? All the years of fighting to stay on my feet should have made me a tougher person, but as I get weaker I find it much harder to stand up to many things. Bullying is one. I was bullied in elementary school, jr. high, and high school. I was bullied in the working world. I have even been bullied by neighbors and landlords. Ridiculous. There is no excuse for any person to push someone down and stand on them keeping them from pulling themselves up. I'm thankful God taught His children to always reach out a hand to help others up. No matter how small the pain, there should be someone there to help ease it. When there is no one, the pain is magnified. At this point in my life, I live in pain.

I'm thankful to have pulled myself up today. No matter who pushes me down from this point on, I will always be there to extend my hand to pick them up no matter how much pain that hand is in. I would hope someone would do the same for me.

Opportunity

There is an opportunity...something so rare! A place where the air is not so humid and the heat will not make me so terribly sick eight months out of the year. The doctors and hospitals are top of the line. The people kinder. The cost of living lower. The opportunity for my self esteem to return. There is an opportunity for me to move to Carroll, IA where my college friend lives.

With opportunities there are always blocks. One block is the cost of moving. Due to my poor health, I can't move belongings in a uhaul. I have one friend who would help me. We simply can't physically do this. We need movers. VERY expensive. We need money for moving.

My friend is finding it hard to locate housing based on income in Carroll. This is very important since the government is threatening to take the only income I have away. The cost of buying a home there is very reasonable. However, an income of $10,000.00 a year does not a good candidate for a loan make. I cannot do this. It would take a miracle to get a home. However, living in another apartment complex is not an option unless it is senior related. I cannot move from one unsafe place to another.

NOTHING is impossible. There are so many miracles just waiting to be had. So many angels walking among us just looking for someone to help. I can only hope for someone to reach out and help me obtain this opportunity.

Experience

Opportunities in this world are rare...that's why you have to take them when they come. But have my opportunities all gone since my illness has worsened?

I started working at age 14 in a local Dime store. My father and mother taught me to work hard both in school and for everything I ever needed. I am grateful for this gift. I worked during college. My first two years of college, I worked at night at a sewing factory and earned scholarships. The work paid for my clothing and other needs. It also helped pay for family needs because my dad said, "You've graduated. Get a job and pay rent." Didn't matter that I was going to school. I had to contribute. And I did.

When I transferred to a college away, I worked, got scholarships, loans, etc., anything to help me earn my degree. The family didn't have money to help me. I did it myself with hard work and much prayer. On graduation day, I walked the line, packed my bags and returned home to care for a very ill mother until she died the following January. I worked full time and cared for my dad and brother until both died.

When I was diagnosed with systemic lupus after being so sick for months after my brother died, I pushed on working hard. My job, however, did not want me "draining their insurance" even though I was early in the illness. Shortly after my dad died, they laid me off. I learned a great lesson during that time. Church does not equal compassion.

I continued working and working until the disease sent me to the ER many many times, the last one throwing up blood. It was then I was told by my doctor I HAD to stop or I would die. Little did I know the world I would enter would destroy what little self esteem I had left.

Church Sunday School "family" told me they thought I would feel better going to another church. No one sat with me in church. When I went to the ER, no one came. Even today as I am confined to a small apartment in a very unsafe neighborhood, I do not have visitors or supporters. When I am in the hospital, my one devoted friend is the only person who visits. My family is dead. I never married....I took care of my immediate family while they were sick and took care of their final burials. There is no one left. I worked. It was the most devastating life changes I ever faced having to stop working, losing my family, losing my health.

Now I am thankful just to be able to get up in the morning, on days I can, stand in the shower, when I can, and sleep without pain, which is few and far between. It only took one diagnosis to destroy the work I started as a young teen, to destroy the life I had hoped for, to destroy the dreams I was determined to make reality.

My life is one of disability, medicare, loneliness and fear. I only go outside now when I head to the hospital,doctor or grocery store. The neighborhood I've ended up in has taken what is left of the crumbs of my self esteem. There are days I breathe in and out and wonder why.

Have my opportunities all died with me?

UPDATE: Diverticulitis and Kidney Infection

Friday I awoke with a severe pain and swelling in my abdomen. Know that sign! Last time I ended up in the hospital for three days. Diverticulitis! Off to the ER I went with my compassionate neighbor. I am so thankful she was home because my only friend was out of town.

I was blessed in that I didn't have to wait very long to go back. They did x-rays, catscan, blood tests, urine tests, put in an IV and gave me lots of fluids and two pain shots along with something to rid me of nausea. Turns out I had diverticulitis but a milder case and a bad kidney infection. I'd had the symptoms for weeks but since I saw my rheumatologist the week before and he did a kidney test, I assumed he would catch it. He didn't.

I was there for many hours...many hours. So grateful God put my neighbor there with me. She was so kind and comforting. They decided to let me go home which I was thankful, too. The lupus sores all over my behind had begun to swell again and sitting in that hard bed was not helping. Two antibiotics plus pain meds plus antinausea meds went with me. Add that to the 20 meds I already take for Systemic Lupus, Aortic thoracic aneurysm (just below the heart - 4.5 cm), mononeuritis multiplex (permanent nerve damage in both feet and left leg), Insomnia due to lupus, Depression, arthritis in spine, degenerative disk, congenital spinal stenosis, Hypothyroid, Fibromyalgia, Osteoporosis, Osteoarthritis, TMJ, Chronic Irritable bowel syndrome (constipation) and Sleep Apnea. Expense expense expense!!

After a week, I started to feel better. Still working on the meds, it wasn't long before a relapse occurred. Back to swollen painful abdomen and kidney infection. Have a doctor's appointment on the 25th so I'll wait until then. Will see what she does.

The only problem with the hospital I had this time was my history in their computer. They had my aneurysm in the WRONG place. They listed it in my abdomen. It is just below my heart and has been there for a long long time now. Now that is scary! What if it had burst and I had to go in the ER? They would have looked at the wrong end!

It took me a long time to trust a doctor. I still have a hard time and can tell within two visits whether they are worth the time, care, or just collecting the money. Unfortunately the first criteria applies to doctors I can count on one hand.

One day I'll be able to move to a state where health care is much better.

Thursday, April 28, 2011

So much Destruction

So much death and destruction. So many people will blame God. I am assured He did not cause this. I am reminded if God was indeed punishing through storms, He'd headed straight to Washington. He promised not to destroy us. Remember the rainbow? The tornadoes were random. So many innocent people killed, elderly, etc. My heart breaks for those whose loss is life of loved ones. Devastation. Things and homes can be replaced. Broken hearts from death are another thing entirely.

It has been a terribly hot spring. We went from Winter to Summer. The hot weather and storms together created destruction. I wonder if hurricanes will come in time. It has been awhile since we've been hit with a hurricane.

I received the following email and thought it would be good to share (and keep):

Every time I am asked to pray, I think of the old fellow who always prayed, 'Lord, prop us up on our leanin' side.' After hearing him pray that prayer many times, someone asked him why he prayed that prayer so fervently.

He answered, 'Well sir, you see, it's like this.... I got an old barn out back. It's been there a long time; it's withstood a lot of weather; it's gone through a lot of storms, and it's stood for many years.

It's still standing. But one day I noticed it was leaning to one side a bit.

So I went and got some pine poles and propped it up on its leaning side so it wouldn't fall.

Then I got to thinking about that and how much I was like that old barn.. I've been around a long time..

I've withstood a lot of life's storms. I've withstood a lot of bad weather in life, I've withstood a lot of hard times, and I'm still standing too. But I find myself leaning to one side from time to time, so I like to ask the Lord to prop us up on our leaning side, 'cause I figure a lot of us get to leaning at times.

Sometimes we get to leaning toward anger, leaning toward bitterness leaning toward hatred, leaning toward cussing, leaning toward a lot of things that we shouldn't. So we need to pray, 'Lord, prop us up on our leaning side, so we will stand straight and tall again, to glorify the Lord.''

Sunday, April 3, 2011

Pain

Today I awoke to PAIN. It feels like the left side of my face is frozen in pain. My sinuses stopped up, pain on the left side of my head, mouth, down my glands. I know it will take time to heal. The lupus fevers started this morning, too. 102 degrees. Sweat. Fever. Sweat. Pain is bad. Can barely walk. Always takes a couple of days to set in after any kind of surgery or procedure.

Heat is bad here, too, already. Just so much pain. Hate taking pain meds. They keep you from mentally functioning. Can't sleep even though they make you sleepy.

Oh how I wish I lived in a MUCH COOLER climate. Would be easier to take the pain.

Tuesday, March 29, 2011

Oral Surgery for Friday

Saw the oral surgeon today. Will cost $589.00 to take out the wisdom tooth and the tooth it has grown on top of. There is a cavity in the wisdom tooth and the pain is horrible. So it has to come out.

He was concerned about my aneurysm because he would have to put me under to get the teeth. Even so, he agreed to take them out. I go in Friday at 9:30. As much as I dread this one, I'm tired of being in pain. I've had a flare from the broken tooth for three months. When it came out, the other side continued the flare. I could barely walk today. Even though it takes longer for lupus patients to heal from any surgery, I'm willing to take the chance to lessen the painful flares. It will be nice to extinguish the match that keeps relighting the pain and swelling throughout my body.

I'm still in shock...$589.00. Wow. I should have become a dentist.

Monday, March 28, 2011

ANEURYSM UPDATE

I called the surgeon's office last Wednesday morning to check on my test results. There was a long pause, I was asked to repeat my name, then spell my name and was put on hold for a long time. Afterwards a different person came back on to tell me the aneurysm is 4.8 cm. Repeat the scan in six months. I reminded her my insurance will only pay for once a year. So she repeated one year. I asked why no one had called to tell me my results. She said, "We received the results the first of the week, put them on the doctor's desk, and he reviewed them. He passed them on to us, but we kind of misplaced them. Terribly sorry for the inconvenience. Anyway, you don't have to do anything till next year."

I am thinking, "Oh never mind I have a time bomb in my chest. Never mind I'm waiting to hear if surgery is coming. Never mind I had to call you to find out my results. Never mind my doctor may not be here this time next year." I just told her thank you and hung up. No need in saying anything else.

Doctors are frustrating when they don't seem to care. Would it be a better world outside this state? Better health care? Better doctor care? Would I have a chance at a QUALITY of life or what's left of it? I think so. I just don't have the physical help to get there. It is so hard when you're alone and have no one to help you find a place to live or help you pack boxes or give you hope when you need it the most.

So many nights I've gone to bed and prayed I wouldn't wake up to see another day of hopeless no quality life. Instead of someone who has no idea what it is like to walk in these shoes pass hard judgement on me, I can't tell you how much a kind word or a hand reaching out to help me physically get out of here would mean to me. My hope has drained to the point of brokenness.

Is there any hope left?

A New Post

It has been awhile since I posted. March has been a long sick month. A broken tooth of three months before had infection set in setting off many lupus flares. The pain was so intense I had no choice but to see a dentist. With the help of a friend, I was able to have the tooth removed on the second visit once the infection was cleared up. Now I head to an oral surgeon on Tuesday. The wisdom tooth in the far left side of my jaw (upper)grew on top of a tooth damaging it over the years. It now has a severe cavity in it causing severe pain in my jaw making it hard to eat. He will have to surgically remove both teeth. $400 per tooth.

I never had my wisdom teeth removed because my family could not afford the expense. Even though I worked while going to school, worked my way through college, all of the money seemed to go toward cost of living and tuition. Now I'm paying the cost.

With lupus comes tooth decay. I lost a tooth during my student teaching year in college. Scared me, but I went on dealing with it. It seems since my flares have increased, dental problems have also. Being on fixed income with no dental insurance, dentists are not an option. I am thankful for the help.

I see the dental surgeon on Tuesday (tomorrow). Will see what's next.

This was my experience before having the tooth removed:

The second week of February, The Baptist Association held a health and dental clinic in Dothan. Sandy and I stood in line in the sun for hours just for me to see a dentist for free, at least to be evaluated. I didn't get treatment that day, but qualified to receive treatment to remove the tooth.

And so I waited...and waited. The tooth was inflamed all week this week and I couldn't stand the pain anymore. I called the Association. The lady said, "We called everyone the week after. They saw a dentist the following Friday." I told her no one called me and I've been waiting for a month. I told her the situation I was in. She said, "I don't know what to tell you. There's nothing we can do." They looked great to the community when the services were rendered that day, but if they did a follow up, they would find out many were unable to receive the much needed care.

I remember someone telling me about a Dental Group on Murphy Mill Road. I called and found out the first visit would be $72.00. I took the last $72.00 in my account and headed out the door. He did x-rays, found a great deal of infection spread throughout my gums from the tooth, soaked the tooth in antibiotics, put in a temporary filling, and gave me a numbing shot to block the pain. He also gave me a prescription for an antibiotic and pain medication. He did all of this for $72.00.

I was talking to the assistant sharing with her my story when she said the dental care clinic follow up was held in their offices. She said they sent way too many people to their doors in one day. They were only able to see 80 people. Many were not seen because of disorganization. Many who were in pain and in need and unable to afford the much needed service. They saw 1/3 of the people who were accepted for assistance to see a dentist.

The disheartening part to me was two dentists offered their time and gifts. TWO. There are MANY dentists in Dothan. Sums up Dothan well.

Thursday, February 24, 2011

Test is Set

My catscan and X-ray are set for Wednesday, March 2nd. I hope beyond hope this test will show it is time to repair this aneurysm and let me get on with my life. It has been a brick wall long enough. I'm tired of walking around with a time bomb in my chest. Time to do something. Better to take the chance than to keep existing in dread. I never realized how much this thing has stood between me taking chances and living.

Tuesday, February 15, 2011

I Am Reminded Yet Again

When I went away to college, I learned a very important skill. Question what you hear from someone who speaks in the pulpit. Read the verses they read. THINK about the meaning. Not all men who step behind the pulpit are called to be there.

I sat in many church services as a teen hearing "amen!" coming from the crowd on every word the preacher said. Even the Bible reading or quoting was followed by many amen's back then. After coming back from college, I found myself truly reading along with the passage being read and listening to the preacher only to find not only was the passage read or quoted being misread or misquoted, the message had been "rewritten" to suit the needs of the preacher at the time. The congregation just sat there taking in whatever he had to say raising his ego with amen's after each statement. I made notes the first time so that I could show the incorrect information being shared with my brother, who was a very intelligent man and also could not believe the people were listening to these visiting preachers as if nothing was wrong with this picture.

Since going to a Christian college, and LOVING ever minute of it, I learned there were special people called to the service of God. But I also learned there were just as many people following a line of getting into the Methodist "business" where ministers are moved up a ladder, given a place to live, given a raise each year and retirement. As one put it, "it's the best business in town." I don't think I'll ever forget that because at the time I truly believed only men who were called by God were going to be ministers. Ignorance was soon washed from my brain.

Since that time, I have learned to listen carefully to words spoken, actions taken or NOT taken, by those standing in the pulpit, standing in a teaching position or leadership position. I've learned over the years that social status does matter on how you are accepted. I've learned that the more worldly wealth you have or position in the community you use you truly do stand on a higher pedestal in the church and that there is a ladder that brings them more wealth and notoriety. I've learned businessmen go to larger churches just to make business contacts and nothing more. I've learned words and actions don't always match and that actions speak much louder than words. Jesus' did. I've learned it is easier for those of means to throw money at a situation than it is to open their hearts and arms and do something about a problem that is before them. I've learned people who have much, much is to be expected, yet so many ignore the need at their own back doors. I've learned every word, action or lack of action when they know there is a need or if someone asks for help and they turn their back, they will be held responsible for that action.

I've learned there are many people out there that will believe every word spoken by a minister in the pulpit in so much as to put their own safety at risk. If the minister says the church is praying for the safety of their neighborhood and they should not be afraid to go out into the open without being aware of the possible danger around them, they believe him. They are oblivious to the drug dealers that walk past their door, the gangs that hang out by the corner, the murder that took place on the corner, the multitude of robberies that take place every day in two miles from their own door. I believe that minister will be responsible for every word that is spoken.

Perhaps it is because I have experienced the negative side of life where people have shown me the "church" side of their personalities and the "true" nature they hide from the Sunday crowd. I have experienced the drug dealers trying to break in my door, living just a wall away from me thanks to the greed of a landlord who couldn't care passed his own pocket. It took my calling the police on a regular basis to remove the drug dealers and addict from the horrific situation that I lived near. Perhaps it is because I'm a realist and can see this world is being ruled by the evil that is of Satan and we have to remember that and he is more than willing to come in on the coat tails of those who claim to be Christians to an early Sunday morning prayer meeting. I have learned Satan has his time now, but Jesus will rule this world again.

Through all of this, I have learned not to have faith in people, but in God because people fail you every time, but God does not. People are not love. God is. HE embodies it. HE created it. He gave us intelligence, instinct and a will. It breaks my heart His church has turned into a club of sorts where membership gives you the entitlement towards entertainments galore. Trips here and there, parties, youth entertainment, movies, you name it. The buildings have grown bigger and the walls have shut out the needs of the people who live around them. The larger the church, the better the benefits: country club benefits. Is it any wonder atheists are bashing Christianity? Are any of these things like Christ?

I have learned the hard way that church is welcoming to those who are employed, have a family, are not chronically ill and are able to work in the church. If you are disabled from a chronic illness, it is difficult to be treated less than a person by the congregation around you. Even though it is not your choice to be ill with a disease that has disabled and robbed you from a productive and quality of life, you are quickly reminded how society labels you as not wanted. Ignorance is not bliss in this situation. Never married? Not interested on what path your life took to get you here. Another X in your box. No family? Strike three. Families stick close in church. No one invites you to sit with them or welcomes you into their church family past the initial joining of the church. Sick, disabled and unable to attend services anymore? Name on list. Is there a strike four? There should be. It is then you need to feel God's love through the touch of a hug, a call or a visit when you're in the hospital. When did these things become conditional to what status you hold in the church or what use you are?

Where is God in all of it? I remember walking into the small country church when I was younger. The preacher there knew God's word and taught straight from the Bible. We sang hymns that fed the soul. The youth sang musicals to God (our entertainment). On Sunday mornings when I opened those old wooden doors, I could feel God's love and presence in that country church because not only did we want to be there, but He wanted to be there, too. It was the most amazing love I've ever experienced. Whenever I get discouraged about my surroundings and what is happening in this world, I stop and remember the love that enfolded me those many years ago and look forward to the day when I embrace it eternally.

Tuesday, February 8, 2011

Not a Candidate

My surgeon's office called back. Office person said my surgeon said the location of my aneurysm determined I am not a candidate for a stent. When time comes, I have to have open heart surgery to repair the aneurysm. And he said, "And let me take care of her thank you very much!" So she set up the catscan and x-ray for the first Wednesday of March. We'll see how much it has grown.

I didn't realize how much this thing has dictated what I do and don't do anymore. I am afraid of the surgery. Last Friday I watched the 20/20 show Barbara Walters did on open heart surgery, not due to aneurysms, but open heart still the same. I wanted to see what happened and what to expect hoping it would help calm my nerves. One thing she said calmed me more than anything else. If you die, you won't know it. If I die, I'll walk into Heaven. What better way to know it. Peace came. I'm okay again.

I've been so exhausted for the past six months. Can't function enough to walk much. Just going to the store wipes me out. I wonder if it is associated with the aneurysm. I've reached the point I want to have the surgery and get it over with. I want to be able to walk with stamina, have a life again.

I'm too tired to write anymore.

Tuesday, February 1, 2011

Alone

I've accepted what I have to do...have the stent. The hardest part is doing this alone, not having a family, someone to care, to be there. It has been so very hard dealing with the past few years suffering with this horrible illness plus its extensions alone. My last hospital stay, I was alone. Now I face another hospital stay after the stent alone. It guess that doesn't matter because I'm alone at home anyway. There has to be another place on this earth where the people are kinder, more loving, than where I live now. It has been so long since I've felt the love of a family that I've almost forgotten what it feels like. To me it hurts. When I see a family together, my heart aches because I know no matter how bad the situation, there is a bond of love there. Even though my family was an extreme battle ground and hard to deal with, I miss that connection, someone to care that I'm alive, to believe in me, to be there when I get bad news and know they will be there when I wake up.

There has to be a better place on this earth if I am meant to be on it. I can't bear just existing anymore. Something has to change. There has to be compassion somewhere.

Monday, January 31, 2011

I knew it was coming

Today I thought the heart surgeon's office would call and say, "Time for cat scan and x-ray of aneurysm." Instead I got "you're a candidate for stent surgery because of the size of your aneurysm. NOT ready for that. I am alone. I get this news and have to deal with it alone. Learn to accept it alone. Could you? No encouragement. Nothing.

He talks to the stent surgeon and I hear back from them on Thursday. Another scan will be performed: a CT angiogram. Then they will do a enovascular repair stent on the thoracic aortic aneurysm near my heart.

http://my.clevelandclinic.org/heart/disorders/aorta_marfan/endovascularaorticaneurysm.aspx


I'm still in shock. I knew the time would come, but I wasn't ready for it today. There are so many things I've wanted to do in life like ride a train, love and be loved, play in snow one more time, move into a house and plant a garden to name a few, but seems I've hit a wall, a road block. You see, with systemic lupus and my condition any procedure, whether it be surgery or a procedure like this puts me in extreme danger of not coming out of it.

I plan to tell the surgeon one thing: if you lose me on the table, don't you dare pull me back. I can think of no worse thing on earth than to be yanked out of Heaven for the loneliness and pitifulness of this world. I'd hate to have to hurt him.

The past year when I had so much trouble with the office because I was being harassed by a resident, then harassed by the office, I had no one to turn to for help. Suffered. Stayed inside. Cried for help. None came. God gave me the strength to endure the pain and agony, but people turned away. Dear Lord, please don't ever let me be that way. Never let me turn my back on someone who is in dire need if I have the means to make a difference. How I wish I had someone to help me out of this prison of four walls, but no one came. My heart still longs to be released from the bad surroundings I endure each day. I pray God will send an angel to help.

When someone tells me they need help, Lord, give me strength to help them or find the means to help.

Oh Lord, give me strength to face the coming struggles. Last Friday I was told the pressure in my left eye was very high. I've been having more problems with my vision the past year. Lupus has caused so much damage. The test he performed twice affected my eye and caused so much pain for three days and blurred my vision more than usual. I am possible glaucoma because my mother had it. Have to go back in six months.

Does it ever end? Does anything good come? When?

Monday, January 24, 2011

Sick Sick Sick!!

I spent my birthday alone. Was a sad day to turn 50. Did go to bingo Thursday night since Sandy took the night off. Didn't win anything, but did get free cards.

Saturday Sandy took me to Boondocks in Panama City, FL to eat. Was so nice to go. By Saturday morning I was so sick with the crud. We wandered through the libraries in FL, picked up used books in their bookstore, and headed to Boondocks. My spinal stenosis flared badly and I had to stop at Walmart to get icy hot to cover my back. I could barely walk. Still having problems walking. If it doesn't get better, I'll be calling the doctor specializing in this one.

I'm sick of doctors. Just saw my internal doctor last week. THEN get sick. See my eye doctor this week to see if the plaquenil has deposited on the back of my retina. Also to check on lupus damage to my eyes.

A lady who works with Sandy lost her son a week ago. He had lupus. He decided not to take meds or see the doctor anymore. He developed pneumonia and lupus attacked his lungs leaving two holes. He died at 28 leaving two children behind. I had reached the point taking 20 meds was too much. The reality hit me in the face last week. He was diagnosed a year before. When I asked my doctor if I could come off these meds, she panicked thinking I was serious. She said, "You want to live, right?"

Hard to someone else to understand when they don't suffer. I just wish I had a way of moving out of this horrible, unsafe apartment complex. Sunday the hispanic guy caused trouble. A week before he almost burned the apartments with a grill. Noise is unbelievable. My doctor said I have to move or my health will continue to plummet. How? It costs money. Go where?
NO FAMILY.

I still can't walk outside and get fresh air. Too unsafe. Oh Lord, please rescue me.

Sunday, January 16, 2011

Just wondering

I've been watching the Golden Globes. So many people given so much. I just wonder how many have given back outside of their field, helped others in need outside of their "charities". How many people have they passed by knowing a great need was there. Shrug it off. Justify it with "well I worked for it." How can you justify multimillions of dollars for a movie role? How messed up is this world?

Then I look around the church. I see business men who attend just to make contacts so that they can make more money, women who join to climb the social ladder, stepping on those who don't measure up financially or in their eyes socially because they didn't marry into the right family or wasn't born into the right family. How much to they give back, help others in need outside their charities who pat them on the back. How many people have they passed by knowing a gerat need was there. Shrugged it off. Justify it with "well, I worked for it." Sounds familiar, doesn't it?
How many donate to the church in honor or memory of someone just to see their name in print in the church newsletter because it makes them feel good? What's the difference between them and the celebs? I don't see it.
I thought Christians were suppose to be in the world, not OF the world.

That is why so many people are alone in the world, have no one to reach out to in time of need, lonely, afraid to ask for help. They get more judgement from the church congregation than living in the situation they're in. I remember many days leaving church in tears because that short period of time the people made me feel less of a person, not worthy because I was not in their "social" class, treated like a nobody. I never once felt the spirit of God or love there.

I've learned a great lesson over the years. My faith is not in people, but in God. People have failed many times over. God hasn't. Heaven help me if I see someone who is in great need and I have some way of helping that soul and not doing it. I hope others who read this will do the same.

Tuesday, January 11, 2011

Birthdays

Hard to believe....50th birthday is only a week away. January 20th. It should be a milestone. I hear once you reach 50, you're not as stressed about life. I hope that holds true.

Thursday, January 6, 2011

Need of prayers

I found out last week my aortic thoracic aneurysm doctor has been diagnosed with pancreatic cancer. They gave him three months. He's a middle aged man, far too young. He's a great, gentle doctor. Specializes in thoracic aortic aneurysms. My fear of the surgery left thanks to him. While we're still in a waiting game for it to grow another .3 cm, I accepted the situation. Felt at ease knowing God sent me the right doctor. When I heard of his diagnosis, fear came flooding back. I'll never understand why someone with such a gift as his, a true purpose, a wonderful family is devastated with cancer. Prayers go up for him and his family.

Blessings

So many blessings over Christmas. How do you save them up to last a year?? Visits from people I never see but once a year? How do you cherish them for a whole year? I'm so thankful for the blessings.

I'm thankful I was able to get out of bed this morning and walk to the kitchen. I'm thankful I could sit at the computer longer than fifteen minutes. I'm thankful I can think more clearly today than I did yesterday. I'm thankful I could stand in the shower today without falling over (major milestone!).

I'm thankful to have a roof over my head, a place to sleep at night, a loving cat who keeps me company. Still, my goal is to move this year to a safer place. Being stuck inside 90% of the time with no way to go searching for a new place makes it hard. Knowing someone who knows someone who has a place would be easier. If someone knows of a place, please let me know. I long to be able to walk outside my door, sit outside in the fresh air, take a walk and feel safe again. As it is, I only leave the apartment when I'm going to the doctor or grocery store. Praying for an open door, direction, help.


I'll be 50 on Jan. 20th. It is also the 50th anniversary of the inauguration of John F. Kennedy. I keep thinking I've lived four years past my brother. So many thoughts run through your mind when you're faced with a milestone. Unlike so many who have big birthday parties, I'll go out to dinner and that will be it. I would prefer snow! Haven't had a birthday party in many many years. Somehow it doesn't matter anymore. Having a friend who sticks by you through the toughest times of this illness means more than having a room full of people who never call or visit you gathering for a party. I'm thankful for peace.

was blessed with a gift of staying at the beach for two days at New Year's. The healing waves did their job! There is something so powerful and healing in the ocean. Maybe it is because I feel so much closer to God there. Sometimes I wish I could live on the beach.