Friday, June 28, 2013

LUPUS STILL REIGNING

Lupus is still flaring. Haven't been able to eat much the past few days due to the incident on Tuesday night. It has been a horrible week. Knocked the wind out of me. So sick! Just can't seem to bounce back enough to function.

I've been sitting up some today. Just keep worrying - next Saturday is Wilmore's city wide yard sale. I've been waiting for this one so that I could earn some extra money to get me through the rest of the year. Problem is this week has been a total wash with me being so sick. My ebay auctions are in the pitiful stage. Hardly any views and no bids. I just keep relisting and hoping.

Next Saturday's yard sale will make or break me. Hoping it will help financial. The downside? HEAT! Heat causes me to have extreme lupus flares like the one I've had this week. Will I be strong enough to do a yard sale on Saturday next week? Will I be able to recover from another flare from the sun and heat? Do I have a choice? No.

 

Thursday, June 27, 2013

NEW EBAY LISTINGS

And Lupus Joins the Fun!

Since my latest sickness episode, lupus flare has joined the fun. Last night my heart started fluttering like a  butterfly and has been fluttering all day. Fevers have broken out several times today. The pain in my body has been horrible. I can't stop shaking. Unfortunately, doctors can't do a thing about the lupus flare. Just say wear it out.

So I rest if I can and suffer when I'm awake. Oh how I wish this disease would go away! I'm so sick of it. I'm so sick of suffering, fighting it, taking mega amounts of medication to try to control the symptoms. I'm so tired of the cost of this disease! I'm so tired of not having a life because of it!

So tired. So much in pain today. And the rain came in yesterday. Pain is more intense. Lupus go away!

Wednesday, June 26, 2013

EXTREME SICKNESS NUMBER 3!

I should listen to the doctor and go to the ER when this happens, but I don't. I've experience so many ER and hospital trips that I'm quite tired of them. Hours of waiting to be seen, once in, they just do tests and you suffer. After more hours of waiting, they come out and say, "I don't know." Then you're sent home to continue to suffer with no answers. In the end, they blame systemic lupus for the problems because they just don't know the answer.

Yesterday afternoon I started feeling sick again. It felt as though someone dropped a lit match into my stomach. Shortly afterwards I experienced a night of diarrhea and throwing up for over four hours. This seems to occur every two weeks. This is the third time now.

When I saw my doctor about ten days ago, he had  cat scan done. Didn't see anything. Wanted to pass me off to another doctor. Been there done that. Didn't want it. Two weeks later, I'm repeating the same experience. What is going on?!

I was exposed to sun this past weekend when I was standing in line for the picnic Saturday afternoon at my college reunion. Why didn't they serve inside like they did Friday night? With the combined heat and sun, I was sick by night fall. Heat alone makes me physically ill. Sun causes lupus flares.

Did the flare attack my digestive system? Maybe. Has the heat been the culprit in the past few episodes? Maybe. I haven't been good about staying inside and watching the heat. Since I've moved, I want to take opportunities to be with people. In doing so, I've forgotten to watch what I eat, stay inside away from the heat, and above all, stay out of the sun!

It was a horrible night, but I refused to go to the ER. It wasn't as extreme as the last one, but was bad enough. I can barely keep down liquid. Food - no way. I'm swollen and in pain. If I go to the doctor, he will just send me to someone else. I'm not strong enough to take a shower, get dressed and go through the routine of red tape.

If anyone who has systemic lupus and reads this post experiences anything like this, please email me. I'd like to know what's going on with you.

Monday, June 24, 2013

THE WEEKEND IS OVER

The hardest part of enjoying a weekend of friends is the "after." They go back home to their lives and I have to get accustomed to being alone again. Life goes back to struggle, loneliness, and starting over. Sometimes it feels as though every day is a starting over point. With God's mercies being new every morning, we start with a clean slate.

Before I get out of bed every morning, I thank God for allowing me to be on earth one more day. Then I ask Him to use this broken vessel (my body, mine and soul) to make a difference in the lives around me. Some days those lives only touch the animal kingdom and that's just fine with me. I am thankful I could get out of bed this morning even though it was much harder today than yesterday. I am thankful I could participate in several events at the college reunion this weekend. I am thankful He put people in my path who understood my pain and struggle because they were dealing with the same situation. I didn't feel as though I was at the bottom of the totem pole.

My friend, Polly, stayed with me this weekend. She drove up from Iowa. Polly was the first person I met when I transferred to Asbury and we have been friend ever since. It has been so nice to have someone in my apartment with me. I felt more at ease. I slept through the night without waking up. She will never realize what she did for me this weekend was take loneliness out of my life if only for a few days.

As for lupus, I was swollen by Friday night and could barely walk on Saturday.   I sat when I could and stood when I had to do so. Was caught in the sun on two different occasions and am now feeling the results. The pain is intense. Walking is hard to do this morning. When I lie in bed, my body shakes from the stress I put it through, but it was worth it. A lupus flare has set in and has put me in bed. Just in time for the rain to come in and compound the pain! Oh rain, please come! Cool us down and reduce this swelling!

I noticed so many things this weekend. When you walk with a cane, many people try to go through the food line to get you a plate assuming you cannot do it for yourself. Very kind and thoughtful of them, but if they gave it some thought, they would realize since I am alone in the world I have to do everything by myself including carrying a plate. I kindly thanked them and said I could do it myself.

People were no different this weekend than any other day of my life. Those who didn't know me did not approach me quickly because of my cane. I'm use to it. I've learned to find a place to sit and entertain myself in surroundings where people are more drawn to old friends or familiar faces.

But God was kind to me. He brought some people close to get to know me. Then something amazing happened: they actually listened to me. Most of the time, I am the listener. Every one talks and I listen. When I have the opportunity to talk, I find myself in an awkward position. I'm not use to having someone to talk to during the day. I'm not use to anyone listening to me. It was nice.

But the weekend is over. People have gone back to their own lives now. No one asked for my address, email or phone number so I won't hear from them. While talking to an old friend, I found out she, too, felt lonely, but kept herself busy. I wish I could keep myself busy but the pain is crippling at times and keeps me in bed. Over the years I have learned if you can count your true friends on one hand, you are indeed blessed. It isn't about the number. It isn't about making new friends to add to the list. It is about devotion to the friends you've made.

Today I feel sad. I am in crippling pain. I am alone again.

Thursday, June 20, 2013

LISTING EBAY

So I've reached desperation and am listing what I have on Ebay. I've run out of pennies! If you stop by here, please take a moment to check out my auctions:

http://www.ebay.com/sch/maryjcal/m.html?item=321145056276&ssPageName=STRK%3AMESELX%3AIT&rt=nc&_trksid=p2047675.l2562

 

Wednesday, June 19, 2013

30 Years?

It has been 30 years since I graduated from college. My reunion is this weekend beginning Friday. I live a few blocks from the college so I will be able to go unless the heat is too much for me to walk down. There are a couple of people coming I haven't seen in a while and I'm excited. Unfortunately, I will only be able to go to the free things. Won't be able to attend the Class dinner because of the cost. Won't be able to attend the campus picnic, etc. because of the cost. Just makes me sick to be in the position I'm in. Still have medications to fill and am already counting pennies until July 3rd.

This is the first time I can actually walk down to the college and enjoy a reunion and go home at the end of the day. I'm thankful.

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My friend, Julie, came over today and brought some homemade chicken salad, soup, and some chicken she just decided not to use. It was a welcome feast for me! We sat on the front porch and enjoyed each other's company. I am so thankful to not be stressed out as I was in Dothan. She told me about a friend of hers who lived in Alabama, but has returned to Wilmore. He said he purchased two dogs just to guard his wife when he was away on business because it was so unsafe. Sounds about right.

So thankful I can walk out the door and not feel unsafe. So thankful I can sit on the porch and be at peace. Now if I could get rid of the extreme stress of having to count every penny, worrying about whether to turn the air on because I cannot afford the electric bill next month, worrying about feeding my beloved cat, etc., etc, etc., a tremendous amount of stress would be gone from my life. I feel as though I'm standing at the top of the mountain and can see the green valley ahead, but just can't seem to find a way down. The "if onlys" keep getting in the way.

Until then, I'm pouring out the penny jar and counting up the change to make it to July 3rd.

Monday, June 17, 2013

SICK NIGHT AHEAD

It is going to be a sick night ahead. My tummy is burning and churning again. The swelling started after lunch. I was careful in what I ate, but the pain came anyway. Two throwing up episodes in one month. And now a deep burning pain set in for the night. Will I ever find out what's going on?

I called the doctor's office again this morning to find out the catscan results. Left message for them to call me. Called back and talked to the front desk. Explained my situation and how I had to chase down my test results last time. She took down all the info after she found out there were no results in my file. I told her the hospital told me the results would have been there last Wednesday afternoon or Thursday morning and I had called Friday and left a message for someone to call me, but no one did. She apologized and promise to get someone to call.

An hour later, the doctor's assistant called. She said the test showed no abnormalities. In other words, they didn't see anything unusual. Offered to send me to gastro doctor, but I declined. Why go through more testing when nothing is inflammed? I'll go to the ER WHEN it happens again and it will happen. Let them do their tests and find out what's going on.

So it could have been food poisoning, gall bladder or even related to my aneurysm. I'll just have to wait until the next attack.

It hurts when I eat or drink anything.

I have two more weeks of the month to stretch Fifty dollars for groceries and medication. I don't think I'm going to make it and I'm scared. There are a few cans in the cabinet and a loaf of break. Oh how I wish I could win Publisher's Clearing house and not have to worry about where money would come from just to buy groceries each month!! I wake up each day hoping the end of the month is a bit closer to the end.

I'm tired. I'm sick. I'm so worried about money. Help me Lord!

Saturday, June 15, 2013

Counting Pennies

I spent yesterday taking photos and gathering items to put on eBay. Anyone who has ever listed items on eBay knows this bad economy has lowered chances of selling items. Just not dependable.

I also counted pennies so that I could buy a few groceries today. Two and a half weeks stand between me and money.

Worry, stress and wondering what I am going to do for food when the few items I purchased today run out. I've been eating toast for breakfast, but have been so thankful to have that toast.

Sitting in the dark right now. Conserving electricity so that next month's bills will be less, I hope. It is so very hard to juggle the cost of monthly bills when you are living on $800 a month, especially when more than half goes to rent.

Still have medications to fill, but I'll be counting pills to see which ones I can skip this month. I just don't have enough money to refill them all.

I spent today with two friends, one who shared her leftover food from a meal she did last night. SO very thankful for the good food! I rarely get a meal anymore. We sat on the other friend's back porch and read the book of Ruth today and watched the robins feed their babies nested in a corner and colorful finches twirling on feeders just over the neighbor's fence. The breeze was cool underneath the shelter. For a short while, I didn't think about financial worries, whether I could afford to refill my medications, or how I would make ends meet this month.

Now I'm back to reality and counting pennies on my living room floor. When the small amount of food is gone, I'll be eating toast and grits until July 3rd arrives.

Thursday, June 13, 2013

STILL WAITING

When you go in for any medical test, you wait and wait and wait and wait for the results. Those who have never had tests think you get instant results. If only.

When I went  in for my test yesterday, I assumed it would be a quick in, scan and out. Instead I was given a bottle of "fruit flavored" water looking bottled of chemicals to drink. For those who invent this stuff, don't try to hide it as "fruit flavored." There is nothing close to fruit in this bottle.

As you drink this horrible concoction, your mouth turns inside out and you refrain from throwing up. You realize why there aren't any plants in the waiting room because others have already pours what was left of their bottles into the pots killing the previous plants. And if you brought a friend with you, you now have a "medicine police" watching you drink every drop of that horrible bottle of toxin. You lose every bit of your taste buds. You walked into the room starving and thirsty because you couldn't eat or drink after midnight. Now you could care less if you swallowed anything!

Trying to take the suggestion of drinking it down and getting it over with just doesn't work. It would just come back up again. So I tried to use my other trick - good thought memory of meeting Kevin Spacey fourteen years ago. It didn't work either. Just washed away in horrid chemicals.

The more I drank, the more my stomach hurt. The pain was worse. It took more than twenty minutes for me to finally drink the horrible "fruit flavored" chemicals someone obviously labeled as such for a joke.

The wait started for fifty minutes. Fever set in. I should have taken the token blanket they offered earlier. They disappeared afterwards and no one came through after I finished the bottle. So I shook and froze waiting for the clock to tick off those minutes.

Finally a tech returned to usher me back to the cat scan room. An ER nurse hooked me up to the IV to run the dye into my system. It was a familiar dye they run when I get my aneurysm checked once a year. It burns at first, then flushes and makes you feel as though you have wet yourself.

First thing first, I asked for a blanket. It came out of the warmer. AHHHHH!!!!! Felt the heat penetrate each shiver one by one releasing each painful joint.

As she slid me into the cat scan machine, I turned to my faithful memory of meeting Kevin Spacey. It did not fail to relax and bring a smile to my face. After fourteen years, the memory is as clear as yesterday. It has brought me through many painful medical procedures. Thank you, Kevin Spacey! :)

After the test is concluded, the tape is removed from the IV. Okay, medical field, can't you invent better tape for this? It is FAR more painful to take the tape off than to put an IV in! I'm thankful to have been blessed with a sensitive person who put in the IV and took it out.

After arriving home yesterday, the chemicals had made me so sick, I had diarrhea for four hours. The pain in my stomach was worse than ever. I slept for the entire afternoon until my best friend, Sandy, called to tell me she had to put her dearest friend, Macy, her German shepherd, to sleep. Broke my heart! She was twelve years old and was such a loving dog.

Here's some wisdom for you: No matter how rich or famous you may be, if you have to have a medical test or go through any medical procedures, etc., you'll have to face the dreaded medical tape, "fruit flavored" water, chalk drink, back less hospital gowns, and other horrible experiences we have faced.

 

Tuesday, June 11, 2013

CAT SCAN WEDNESDAY

Going in for a catscan on Wednesday morning. Saw my doctor Monday. Thinks I might have had a gall bladder attack Saturday night. Since a milder attack happened two weeks ago, he wants to make sure.

I'm still quite sore from the weekend's illness. Feeling some stronger. Was told by the doctor I should have gone to the ER and the next time it happens, GO! It scared me so badly that I didn't know what to do. He said I should have called an ambulance due to my condition. Looking back, he was right.

Sunday, June 9, 2013

Still Suffering

Two days of weakness. Two days with a severe headache. Two days with so much pain in my abdomen. So much swelling. Still so very weak. This one hit me hard.

A friend told me when you lose your family, God provides a "family" for you. How I wish that were true for me right now.

Saturday, June 8, 2013

Weak As A Kitten

I fought off the fever. It took several hours before it broke. Stopped throwing up around 3:30-4:00 a.m. Sleep did not come until hours later and not for long.

I was afraid to close my eyes, afraid to drift off, afraid to think of myself alone, unable to call for help if I needed it. The phone in my hand, my head propped up on three pillows, my throat raw from throwing up for hours, I could not fight the weakened state of my body anymore. I simply passed out from dehydration and exhaustion.

Rascal woke me up two hours later to feed him even though I could not walk past the door. It was several hours later before I could manage that act of love.

I feel as though a mack truck has run over me, backed up and run over me again. It must have been food poisoning. The symptoms pointed directly to it. Still running fevers. Still having diarrhea. So thankful not to be throwing up. Just so weak.

Since I have a chronic illness like systemic lupus, my immune system is already weakened. The food poisoning just mowed me down. The next few days will show how the lupus will respond to the attack on my body.

I am still alone. Wishing I had a family member I could call. Wishing I had someone in my family who was just in the apartment with me. Just having someone near is comforting.

But there is no comfort. No encouraging words. No one to bring me soup. No one to bring me fluids. Makes dealing with unexpected sickness so hard. Makes dealing with a chronic illness like lupus nearly impossible.

I am as weak as a new born kitten. Sleep please come.

A Night of Hell

It is 2:30 am in Wilmore. The town is quiet. Night creatures are making their way from point A to point B in search of food.

Rascal is sleeping as closely as he can to be near me. He knows how very sick I am tonight. I spent the past four hours throwing up intensely and running on the other end. I'm running a horrific fever of 103 degrees. I'm shaking so badly, just can't warm up no matter how many clothes I put on. Snuggling my feet under Rascal doesn't help to warm them up.

I feel my insides fighting to wrench out even though there's nothing left at this point Is it lupus?? Is it diverticulitis? It could be either. Could it be food poisoning? I will NEVER eat Chinese food again. Ever. I forgot how rice gets traps in the diverticuli pockets. Never again. What should take a few hours to clear my system, took thirteen hours and a great deal of pain. Its exit was not pretty.

I am so weak and so sick. I know I need to go to the ER, but it is too late to call someone. If I were in AL, I would have called Sandy She would not  have hesitated. I miss her friendship so much

I don't have anyone to help me I don't have anyone to call when I am so sick. It costs too much to call an ambulance. How I hoped Wilmore would have blessed me with a friend who would be there during days when I was suffering. I'm so hopeless.

In my dreams God sent me someone who cared enough to say "I'm in it for the long haul, I will always be there when you need me, I'm a phone call away." Those dreams gave me hope. Oh person of these dreams how I wish you were real tonight. I wish you were here to help me.

My biggest fear is dying alone. My health is fading so quickly now and that fear will become a reality. There is a note posted in my apartment to call Sandy when someone finds my body and to leave Rascal in the apartment until Sandy can get here to pick him up. Don't uproot him. Sandy will take him home. My life insurance policies are up to date, power of attorney to Sandy, and will to her. She knows what to do. My body will be taken back to Newville Old Center Methodist Church to be buried next to my brother in the plot I bought when he died, There is my headstone waiting for the death date to be carved,

What scares me the most about dying is my body being left unknown for days or weeks before anyone notices something is wrong, There is no one who comes to check on me. No family. No dear friend who has seen the importance of this task. Oh man in my dreams who will be there for the long haul, please help me, Don't let me die alone.

Tonight I lay on the bathroom floor throwing up, running diarrhea, for four hours, dehydrated. My body too weak to walk to the kitchen to get water. Crying because my greatest fear may come true. I threw up blood at the end where the greatest pain came, I put a pain patch on my stomach hoping it would seep into the anger in my belly, ease the damage there so that I could finally find sleep.

Water is not helping me, I need diet ginger ale, but I am too weak to walk to the store to get some. Sweet angel please bring me diet ginger ale.

I can't fight horrific pain and agony like this alone, Please, Lord, send me a compassionate friend who will stand firm beside me through this nightmare I face,

I am so thankful for my Rascal, His love has been consistent and compassionate. People could learn so much from him,

Tuesday, June 4, 2013

Hard Working Scarecrow

Being a scarecrow in Wilmore is HARD work!

 

A Lupus Day

It is a Lupus day. I woke up, fed the cat at 5:00 a.m. because that is when he yells in my ear to get up and feed him. If you have a cat, you know there is no appeasing one when it is time for him to eat. So I pulled myself up, pushed myself along the wall until I found the food to give him, then pushed myself along the wall again and opened the front door to give the outdoor cat the leftovers.

I had to crawl onto the couch and rest for an hour after feeding the felines this morning. I could not walk the short distance back to my room. It was too painful. When I was able to pull myself up, I moved slowly along the wall until I made it safely back to my bed.

There was no fever. No warning of pending flare. Just pain. The same pain I wake up with, carry as a burden throughout the day and pray will subside when sleep finally comes.

Today's lupus showed itself in extreme fatigue. It isn't the fatigue that a short nap can cure. It isn't the fatigue that goes away after a good night's sleep. It is the kind of fatigue that feels like someone took your body and wrung it out like a wet bath cloth. They left you hung out to dry but full of painful wrinkles unable to move.

There was no rain today. No extreme stress. No lupus flare indicators. It just came like a thief in the night to steal another day of my life away. The lupus thief has already stolen the quality of my life in so many other ways. First, opportunities for friendships - some people think it is contagious. They are afraid to touch me, to hug me, afraid they will catch this horrible disease. They simply do not understand it is not contagious. In fact, they are more dangerous to me than I am to them. My immune system is weak and I catch colds, flu, and infections far more easily. Then the monster attacks my organs instead of the infection.

Second, some don't understand that I have to plan ahead of time so that I can reserve my small amount of strength. Just because I look okay on the outside does not mean the disease has not destroyed me on the inside. It takes planning to make sure I can enjoy the time spent with them.

Third,  for the past eighteen years I've spent many days, weeks, months in the ER, doctor's office, and hospital. I've been on and continue to be on twenty different medications just to maintain this disease and to keep me alive. It is extremely expensive. My former doctors did not expect me to live as long as I have. Sometimes I wonder why God still allows me the grace to live another day.

Fourth,  for the past eighteen years, this disease has caused many other illnesses for which I'm suffering as well as systemic lupus. They have caused damage to my nerves, digestive system, brain, heart and lungs. I've suffered a mini stroke. Every year I go for a check on the aneurysm that sits below my heart. There is scar tissue in my lungs from the many lupus flares that have attacked them. Lupus has destroyed the nerves in my feet and legs. I can no longer feel anything from my knees down. Doctors recently determined that the nerves are dying from the tops of my thighs down. There is nothing medically that can be done. 

And finally, for the past seventeen years, I have suffered with all the loss, extreme pain, sadness, side effects from medications, hospital stays with only one visitor, countless ER trips, etc. without any family. I lost the last member of my family when I was 35 yrs. old. All of my aunts, uncles, only sibling, parents and grandparents have passed away. Most people would say, "You are not alone. God is with you." I have grown closer to God more over these past years because He has been the only one to stand by me. But I have also learned through this horrible disease that people would rather pray for you than love you, say things like "You are not alone, God is with you," as they go home to their loving families. I have learned that feeling accepted and loved at church is a whole different story. And if you don't feel love and accepted at church, isn't there something wrong?

I am a human being who is alone. I am suffering. I am sick. Don't judge me. Accept me. My home is not spotless. I am not the person I use to be.  I'm too sick to keep explaining over and over again why I look okay on the outside when I'm suffering on the inside.

Saturday, June 1, 2013

And So Another Appliance Dies!

My air conditioner died this week. It took me three days to realize there was something wrong. I'm blessed to have a landlady who gets things done in a hurry. The repair man came out Friday mid morning because she told him I had health problems. Luckily, it was a blown fuse in the unit. Took about half an hour to find the problem and repair it. So thankful for air! But now I'm paying for the heat - make me physically ill!

During the days when the air was out, my wonderful "dream come true", best fan I ever had fan died. It lasted me five years. Strong fan! Went through many 100 degree 100 percent humidity Alabama summers. When I arrived in KY, it slowed down. By October, it stopped. When Sandy came in January, she tinkered with it and "repaired it" enough to get it going again. Unfortunately, it chose this week to completely die.

It was a Climate Keeper Pedestal fan with remote. Of course, it didn't take me long to lose the remote. I still used the fan on a daily basis. Kept my electric bill low. A friend bought the fan for me from Walmart. I searched online at Walmart,com and didn't find one. Then again, five years ago it was $40.00. I couldn't buy a new one now.

I miss my Climate Keeper fan so much. With the rains blowing in, the humidity has been high. Lupus patients are walking barometers. Not only does the pressure hurt, but the sweating is intense. The meds raise my body temperature higher than most people. So without the fan, I'm miserable.

I sat outside last night to enjoy some cool air. Watched the lightening bugs and saw a rabbit hop buy. Picked a few wild strawberries in the grass to put in my bird feeder. So many simple pleasures. I wonder how many people here take these things for granted? I cherish each one.

Time to crawl back into bed. Fever has set in.