Thursday, May 30, 2013

So Much For Subsiding Flares!

I knew it was quite warm inside, but with all the medications I take, my body heat is higher than normal. For the past two days I've been so hot! Today I paid attention to the heat inside. When I walked outside and it was cooler there than inside, I knew something was wrong. Checking the vents, no cool air. The air just ran and ran and ran.

Yep. The air conditioner has died. Now where was this heat when I was freezing this past winter?

I called my landlady and she said she'd call someone first thing in the morning. Hopefully someone will be available to do something about it. I think it must be out of coolant or whatever you put in air units.

Right now I'm burning up! Poor Rascal! He's burning up, too. We have a fan blowing, but it is blowing hot air. If it has to break down, better now than mid summer.

Heat flares my lupus worse than anything else. Winter is bad on the joints, but heat makes me physically ill. I should have known Tuesday when I was throwing up something was wrong. I fear becoming ill in the summer. Just recovered from vasculitis. The sores remain, but the itching and breaking out have stopped. The heat weakens my system.

So the cure for tonight? Shower and fan. Bath cloth on the back of the neck to bring down my temperature. Prayers that she finds someone to repair it on Friday!

When something bad happens, something good is around the corner.

Flares Are Subsiding

Seems my flares are subsiding a bit even though the heat is rising in Wilmore. With the heat comes misery for me. My meds raise body temperature which means high 70's-mid 80's makes me swell and not tolerable to the heat.

I was treated to lunch yesterday by my friend, Julie. Someone had given her a gift certificate to Solomon's Porch here in Wilmore. It was so nice to sit and have lunch without worrying about counting pennies. I was so thankful to be invited! Solomon's Porch is a nice little place. Wish it were here when I was in college. The owner says they get more seminary students than college students. Perhaps seminary students have more money! You can tell who students are - always sitting in front of laptops or books. How I wish I could go back to school! If ever I win Publisher's Clearing House, I will go back to school and take classes I've always wanted to enjoy.

Just a short time outside yesterday stopping to run a couple of errands wiped me out. The weather guy says KY is experiencing July temperatures. If Mid 80's are July temps, I'll be excited! In Alabama, July temperatures are 100's with 90 degrees at night. Will be glad when the cooler temps arrive in a couple of days. Just being able to function is hard.

Systemic lupus chooses which area it wants to attack. Monday and Tuesday, it chose to attack my digestive system. It felt as though someone had dropped a match in my tummy. I was so sick from throwing up that I didn't know what else to do but hang out in the bathroom. My body continued to sweat hard hoping it would sweat out the poison that continued to wreak havoc on my system.

 I'm still weak from that episode. Woke up in a cold sweat last night from breaking a fever. It upsets me so much when people say "Well you look good," because that translates into "you don't look sick to me." It isn't meant as a compliment. It is meant as a judgement.

Heading home from our errands yesterday, a song came on the radio. It was about a man who was an alcoholic who shed his labels and said he was now the child of the King. Talked about how we should shed labels and not live in the past. I believe this, too, but it is so hard to do so when there are so many people standing in line to stick MORE labels on you. I've had so many "labels" stuck on me the past 18 yrs. from this disease that if I pulled them all off, the sticky would attract so much dirt I couldn't scrape it all off. No matter how much I rid myself of "labels" there are more people waiting to put more on, silently snuff out the small amount of self esteem I have left, pass judgement from one sided stories.

Yesterday was the first time I went out in three days. I encountered two people: The first was a lady who was so kind to me when I visited a local church back in October of last year. We shared a mutual friend that did not work out on my end because the mutual friend was harsh, judgemental, selfish and controlling. So I backed away. Never said a bad word. I ran into the lady yesterday and could feel the cold response coming from her. She didn't have to say anything. I knew my name had been slandered. When we left the restaurant, she never looked up at me. I knew then I had been part of the gossip at lunch. Stomp and label.

When we walked outside to leave, we ran into a very nice man who attends our writing group. He was with a friend of his. The friend was friendly and open to my friend, shook her hand and talked to her. When our writing group friend tried to introduce me, he all but ignored me. Invisible. Stomped. Ignored. Labeled yet again. Afterwards I reviewed the conversation in my head and Labeled him as well - he came from Florida, his sister is a doctor in Dothan, therefore it explains his rude behavior.

I cannot help but wonder no matter where I go will I always be invisible, judged, treated badly because of one sided stories? Is it no wonder why I have retreated to be a somewhat hermit in my life? No matter. If people choose to build themselves up by telling lies, I won't follow their example. I refuse.

God says in His Ten Commandments number nine: "You shall not bear false witness against your neighbor." So many times I hear people telling one sided bad things about a person because it didn't work out to their benefit. Is that not bearing false witness? Isn't gossiping to another, which destroys the person's character, false witness?

I'm not a perfect person by far, but I want people to be honest with me. In turn, I will be honest with them. It is a trait I hold dear. When I see someone I know is a Christian repeating false witness passed on by someone who didn't get their way, continuing to destroy someone's reputation from one side of the story, it makes me sick. They should know better. It is far more damaging coming from them. If they want to know what really happened, why don't they ask the person? Just my two cents. False witness destroys lives. It hurts to the core. And it destroys a Christian's witness in an instant.

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As the day came to a close, a knock came to my door. It was my next door neighbor. Her small son had a pink rose in his hand. She had a bowl of fresh picked lettuce from her garden. They did not know how much I needed their kindness yesterday. She said she gets roses from her job all of the time and wanted to share that one with me. It just excited her son to give it to me. It lightened my heart! The lettuce was my dinner - a fresh salad.




My apartment is still a mess. Boxes with items scattered, ready to be labeled for a yard sale. Floors that need to be mopped. Dishes that need to be washed. I just don't have the strength. I have the systemic lupus "rung out wash rag" extreme fatigue. Looks like Rascal has caught it from me as he sleeps on the sofa.

I'm thankful God reminded me not all people are the same. My heart was a bit broken yesterday when I encountered those people and wondered if I would ever toughen enough to not be so tender hearted. I don't think so. Too compassionate. I'm thankful to be compassionate.

It makes me so very thankful for the wonderful people God has put into my life. They make all the difference in the world.

Tuesday, May 28, 2013

The Heat is Back

It has been a lonely three days. The only person I've seen has been the lady who delivered the last of my medication this morning. I had hoped the lonely part would be different in Wilmore, but it seems that people are the same no matter where you go. I'm thankful for the friends I've made here and cherish them. I only wish I could have a "normal" life like other have - a life where I get up in the morning, get dressed and go to work, go out to dinner with friends with no thought to an extreme budget, no worry of anyone passing judgement on me because I'm sick, being able to go outside when it warms up instead of being trapped inside because the heat makes me physically ill.

Life is different for someone who has a chronic illness. It is worse when you're disabled from it. People judge you. They put you into their own categories: 1. you don't look sick therefore you must be lazy.
2. You must be contagious so I'm not going to touch you. Just look at those sores! 3. Single, never married, must be something wrong with you. 4. Not working: can't be because you're sick. Must be on welfare. 5. Your house is messy - why don't you clean? Lazy!

None of the above are true! However, people can be cruel. So easy to pass judgement instead of just loving someone for who they are. So easy to label someone instead of reaching past the pain they must be suffering. So easy for someone on the other side, but not so easy for the person who is suffering.

Once you live a life of being judged and labeled, you tend to back away from people. It hurts even though the broken heart heals. Scars just keep piling up. The worst pain in the world to me is standing in the middle of a large group of people where no one says a word to you. It hurts.

Look at the labels: 1. What I may look like on the outside doesn't match the damage lupus has done on the inside. Want to see my 18 yrs. of medical records? So many times I want to say "You don't look stupid either."
2. Systemic lupus is not contagious. You are more dangerous to me than I am to you! My immune system is compromised when your germs are passed to me.
3.  Single, never married - spent my life as a teacher and caregiver to my parents and brother - buried them before I was 35. Lost my own health to illness. Need I say more?
4.  Although systemic lupus is an extremely expensive disease (tons of meds, doctors, etc.), I am not on welfare! So stop judging me.
5. For a couple of years my health was so bad, someone came in to help me clean. Now I don't have that help. I function two hours a day. It takes all the strength I have to maintain. I am thankful when I can stand in the shower. I am thankful when I can wash dishes. Things a normal person takes for granted takes extreme effort for someone who has this disease. If you don't like the way my house looks, HELP me.

Sometimes I wonder what God must think about His children. They are the most harsh in judgement. They would rather gossip about a person than reach out and help them. When I was at my lowest point with little food, someone told me "I'll pray for you." I'm thankful for prayers, but I believe when someone is hungry, you feed them.

Through all the bad things that have happened to me, the horrible ways people have treated me, the many tears I've shed through this disease and the experience with it, I've learned compassion. When someone is hungry, I'll give them food. When someone is in need and I have some money, I'll give them help. Praying is important, but action is important, too. Put feet to prayers. I've never been in a position to worry about social status or reputation. The only one I hold myself accountable to is God. If I fail to help someone in need, I cannot live with myself. I know first hand how it feels.

I am so thankful for friends who understand, too.

The heat is back in KY. I am physically miserable today. Had to turn on the air. Vasculitis has stopped breaking me out. Now I'm breaking out in lupus sores. I can't go outside and walk. It has reached a temp that is far too warm for me.

One day at a time.

Wednesday, May 22, 2013

Day of Blessings!

SO VERY THANKFUL!!  I can go shopping for food. Rascal was blessed with a huge delivery today. So thankful!! God's blessing are spilling out all over the place! Thank you, Lord!

Tuesday, May 21, 2013

Remembering My Brother

My brother, Elbert Jr, would have been 65 yesterday, May 20th. He died from cancer when he was 46 yrs. old. I miss him terribly.

He will always be 46 yrs. old.

My mother was the first one to leave us. She died eight years before. My daddy died two years after him. I'll never understand why they were taken and I was left here alone.

My dear brother, I miss you the most. You were my defender, my encourager. You believed in me when no one else did.

If you are not close to your family, complaining about a sibling, always fighting with someone, just remember this: family will be there when all others walk away and they will. You always have a home, food on the table, and love in some form or another. When all of your family has gone, you can't get them back. People aren't as kind and compassionate as they use to be. They don't open their homes and welcome those who have no one into their families. Your name and status mean more in this world than compassion and love to one another. It is a different world now.

When you want to complain about your family, think twice. Be thankful for them. They won't always be there. Cherish every moment.

Longing for better days..........

Is It June YET? Still Counting Down the Month!

May is soooooo long! Still counting down the days until I can buy real groceries again. June 3rd can't come soon enough. Hard when you're counting pennies to make it. It's hard when you have to refill every prescription in one month! THIS was the month! When you have a chronic illness, say goodbye to the small amount of money you have.

Having to turn to Ebay. Going through what I can find to list. Next will be my Kevin Spacey movies. Sigh!

Here's my ebay link:

http://www.ebay.com/sch/maryjcal/m.html?item=321129304122&ssPageName=STRK%3AMESELX%3AIT&rt=nc&_trksid=p2047675.l2562

Sunday, May 19, 2013

Sunday

It has been a long, SICK week for me. I just can't seem to shake one flare after another. Flares kicked off vasculitis. I'm to the point of calling the doctor's office and making an appointment. Just when I think this is settling down, a new rash appears, a fever sets in, pain appears. I'm trying to avoid the doctor's office and the ER even though the other night I almost called a friend begging to go to the ER. I was so sick I almost passed out. I have an appointment June 12th. Holding off until then. Yes, it is the cost!

OH to be a cat! No worries. No cares! Just give them a bed, a bowl of food, fresh water and lots of love.



 

Friday, May 17, 2013

Counting Down the Month

It is only May 18th and my money has run out of month. Medications are just too expensive.

Dinner was instant potatoes and canned green peas. I'm so thankful I had them!

Thursday, May 16, 2013

Rain, Pain, Vasculitis, Peonies, and Raccoons!

UPDATE: The raccoon has found better food source somewhere else. I took in the bowl after Buddy eats at night. Don't want to put him in danger!


It rained again today. Woke up to more pain. More bumps. More itching. After talking to my best friend on the phone last night, I realized what this was. Vasculitis! I was diagnosed last January with vasculitis: inflammation of the blood vessels. Same symptoms. Same signs. Just more wide spread this time. I guess all of the systemic lupus flares I've had the past couple of months set off another vasculitis flare as well. Doctors back in AL didn't treat it with anything. So I suffered until the inflammation settled down. Itch. Scratch. Suffer. Rest. The last time this happened it was more contained to one area. This time the rash is spread all over.

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Rain brings beautiful flowers. In KY peonies grow and grow and grow. My next door neighbor set out beautiful peony bushes this year. They are blooming like crazy. I've tried several times to grow peonies in AL but they always dissolved into dust when the extreme heat hit them. Never successful. They are one of my most favorite flowers. I walked outside the other day and took pictures of his flowers. The aroma was so intoxicating that I lingered and breathed in their fragrance. This MUST be what Heaven smells like!

 How I wish I could afford to buy some peony roots or bushes and set them out in my corner of the yard. They dry so beautifully and make gorgeous wreaths. But right now I'm barely making ends meet. I just cannot afford to buy even one plant. So I'll have to admire my neighbor's beautiful flowers.



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I discovered a new "thief" on my porch the other night. A HUGE raccoon! We "discussed" his stealing my dry cat food meant for Buddy, but he must not have understood my side of the story. Last night he returned to the scene of the crime. I tried to take photos through the glass storm door, but my flash kept going off. So the photos are way too bright. You can still see the image of the thief caught in the act. Since he's hungry, I won't shoo him off anymore.


 

Monday, May 13, 2013

Monday's Post

It was a rough night. Fell asleep with the tv on again. When I woke up after a couple of hours, I found myself balancing on the edge of the bed with Rascal taking up most of it. Sat up, picked him up, and moved him back to the other end. He's amazing. I understand it was in the 30's last night and he was cold, but it is a big bed and he has plenty of room to stretch out. Will be in the 40's tonight so he will repeat the body heat push.

I could not sleep last night. The rain came through on Friday bringing pain again. Swelling came with it. A friend called Sunday and asked me to go to Subway for awhile so I did, but the trip out just reactivated my pain. I only bought a diet coke since my funds for the month are now scraping bottom. I have to count pennies, literally, until June 3rd. Stress from worry doesn't help. I'm thankful to have canned food in the pantry. It helps to stretch the month. But I am worried.

The itching is still occurring. Rash isn't as bad as last week, but the bumps are still popping up. So glad I thought about the hand sanitizer. It worked to dry up the rash bumps. Was afraid to go to water aerobics because of the sores and bumps. Afraid the chlorine would cause pain.

I didn't accomplish anything today. Pain was too great. It wiped me out physically. So I tried to sleep and I did for two hours. But the sleep was not peaceful. Instead it was filled with one nightmare after another. I hate nightmares. I woke up shaking from the inside out. Stress again. Worry over stretching money over three more weeks.

Saturday night I had an unusual visitor on my porch. A raccoon. He was sitting on the porch munching down on Buddy's dry food while Buddy sat in his box looking at the strange "cat." I walked onto the porch to shoo him away. He just looked at me like I was crazy. I didn't want him to get into a fight with Buddy. So I used my cane and pushed him off the porch thinking he would run through the bushes to freedom. He didn't. He sat in the bushes and pulled the foot of my cane to him as if to say "What is THAT?"

He was not giving up. I then realized this poor creature was terribly hungry or he would have run off in fear. Buddy had settled back into his box and fell asleep. The raccoon was at the end of the porch. No danger. He returned to the bowl and ate once again until he heard a sound that sent him racing across the street. I haven't seen him since.

I give Buddy Rascal's leftover dry and canned food. After a day or two, Rascal just won't eat it. Buddy is thankful. But now Buddy has to fight the birds for the dry food. In turn, they are pooping all over my porch. I had to scrub the porch last week. This morning I took a look at the front path again. Covered in white poop. You can't hide the bowl. They always fight it.

I looked up the birds. It is a common Grackle - black bird with iridescent head. The description said they eat everything, including garbage. They are definitely not afraid of people. You can't run them off. I put out a small tin of bird seed. They ignored it. Wanted to dry cat food. So what do you do? I guess I'll keep chasing them off and hope they'll take to the small bowl of seed.

In the mean time, I have to find some strength to clean my apartment. It makes me so sad to look around this room and see clutter. But I'm in pain. I'm limited on strength. I'm worried about finances. I'm still itching.

Sunday, May 12, 2013

Mother's Day

I lost my mama two days before my 24th birthday. She was buried the day after. I never married and therefore never had children.

But I was a teacher and in turn a mother to many. I showed discipline, taught them more than information, showed them love and kindness, and hopefully set them on a good path ahead. I didn't get a thank you or a card today, but remember all of those kids who were so dear to me.

I was not a mama even though I longed to be.  I lost mine way too soon. But I'm thankful for the moments I could teach and be a part of children's lives.

 

Saturday, May 11, 2013

STILL ITCHING, "LINCOLN", AND LUPUS

I don't think it is the pain patch! So I've narrowed it down to something Rascal picked up on his fur coat when outside in the grass and then transferring it to me. I tried cortisone cream, pimple cream (to dry it up), rubbing alcohol, etc., to get rid of the itch and stop it from spreading, but nothing worked. Then I tried antibacterial hand stuff. Stopped the itch, but I'm still getting the bumps here and there. If this doesn't clear up by mid week, I'm calling the doctor's office and letting him deal with it.
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Spent the evening with two friends last night. We had a wonderful vegetable lasagna (thanks, Julie!) and watched "Lincoln" (thanks, Chris!). The movie, like history reports, focused on slavery as the main reason of the War between the States.

 I traced my family's ancestry a few years back. During that time, I found my great-great grandfather, Emmanuel Riley, who died in that war. It was a horrible bloody battle. He was buried like so many other soldiers in an unmarked grave. His brothers all fought in the war. None of them owned slaves. They were poor. The only thing they had was farm land and a lot of mouths to feed. These were poor farmers...traced all the way down the line. These men did not fight because of slavery. They fought to hold on to the only thing they had - their land. Even in "Lincoln" a character mentions how he intends to take away the enemy's land. Of course, this isn't focused on nor emphasized for long. But the Rileys found for the land they farmed, the land that provided a home for their families and food for their children. Death came to brothers. Injuries that were not healed came to many. Widows had to struggle to care for the many children once the men were dead.

Just like anything political, one aspect is focused on. Just one aspect. There were many more. The Rileys were not wealthy land owners, slave owners or political men. They were just hard working farmers. So many of the men who died were simple hard working men who were just trying to save their land and protect their families. Amazing how history records only one aspect.
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The rain has been so heavy the past two days. It has brought back the lupus pain once again. How I wish I could wake up in the morning and have the strength to clean my home from top to bottom, do simple things like wash dishes, vacuum, sweep and mop. I still have boxes stored in the closet that are still unpacked. It takes all the strength I have to function on days like this, days when the rain is so heavy that it feels like an elephant is crushing my chest when I try to breathe.

How I wish people could understand how hard it is for me to function. If I do anything one day, and I do mean anything from going to the grocery store or going to a friend's house, I am physically unable to function the next day. My body shuts down. The pain is intense. I wondered for a long time if people just didn't care. Then I wondered if they just didn't listen or try to understand. I can tell a friend the rain sets off severe pain and keeps me from functioning and the same friend will ask me to do something the next day. Did she listen to anything I said? I have long since known people don't understand what it feels like unless they are going through or have gone through something similar. Can't blame them there. But sometimes I wish people understood how hard it is for me to function. If I could do things on a day to day basis, I'd be working again (something I miss terribly!).

As the rain pours down outside, I sit here in this chair typing with swollen hands, pain so bad my hair hurts, and a numb heart. Eighteen years of damage shows its ugly side when I am at my weakest. Today is one of those days.

Thursday, May 9, 2013

Flowers

My friend, Julie, brought by a vase of flowers to share on Monday before going to water aerobics. They've finally made it to the drying stage. The roses are hanging upside down in hopes to preserve their beauty for years to come. The others are sitting in a vase drying naturally.

I LOVE flowers! Have used dried flowers to create wreaths in the past. Each one tells a story - just like pieces of a puzzle. I have a small vase of dried flowers from two friends - Amy and Liz. Most of those flowers dried well and wait to be included in a wreath when more flowers are collected and dried. For now they sit on the counter as reminders someone cares.

Hope to be physically able to plant some daffodil and tulip bulbs for next Spring. My next door neighbor had beautiful daffodils this year.

Sitting here itching itching itching!! Still think it has something to do with the pain patch. Have taken it off for a day or so to see if the pop up rashes stop. If they don't, it could be something Rascal brought in on his coat when I let him outside into the tall grass. He has cried so much wanting to go back out, but I can't take that chance. We are blessed to be in a place where I can step outside the kitchen door and stand with him as he eats grass and wallows in the sunshine. But this horrid rash has put a stop to it for awhile.

The rain knocked me down last Saturday night and put me in bed for the week. Two days ago the pop up rashes hit. Just trying to stay away from the ER!

 

Wednesday, May 8, 2013

A Storm Blew Through

So much fanfare with lightening and loud thunder! A storm blew through this afternoon. With it came the smell of fresh cut grass (which needed to be cut for a long time - thanks to my neighbor). As soon as the rain fell, I opened the door to drink in the smell of rain, refreshing and clean.

I've been in bed since Saturday night from a flare due to weather. Yesterday I was able to sit up for a few hours. Was nice. Now the rain is back and so is the pain. Sad thing is I love the rain - it just doesn't love me back! The flare has taken a turn I hate - rash! Itchy, spreading lupus rash! Add it to the growing list.

Just to let you know, awful disease, you're suppose to get better, not add another symptom as each day passes!

Last night my VCR died. I know I'm still in the dinosaur age, but I used my VCR on a regular basis. It taped many shows, movies, etc., when I was away from home. But now I'm stuck at home more than out - thank you systemic lupus. Still, I could hit record and go to sleep at a decent hour at night. No more.

 I feel lost without it. Try to find a VCR - new in the box - anywhere anymore! It wouldn't matter if I did. I couldn't afford to buy one. Sad isn't it?

I lost my sewing machine in December. I miss it so much. I will now mourn my VCR. As each one dies, I won't be able to afford to replace them. It takes every penny to make it through each month. Medications are so expensive. Food is bottom of the list.

So the rain swept in and out quickly. The air is clean and fresh. My kitty, Buddy, has finally showed up to eat and hopefully will find refuge in his kitty box on the sheltered porch. Once dishes are done and Rascal comes out of hiding from the storm, it is back to bed for me. Will be so happy when this flare is over. It has pulled me down physically and emotionally.


UPDATE: I have a new VCR!! THANK YOU, LIZ!!
 

Sunday, May 5, 2013

Cold and Rainy

Today is a cold and rainy day. I woke up with so much pain this morning that I could barely get out of bed. The weather always sets off a lupus flare. I could feel it coming yesterday as the clouds rolled in. The pressure felt like an elephant sitting on my chest.

I attended a ballet recital with a friend yesterday. Her friends' daughter was in it. Was a day brightener! The kids did a great job, beautiful costumes, and the message they shared was clear. They did "The Parable of the Sower." I caught myself laughing when I saw a little girl holding her mouth just right when she posed in her ballet position. Reminded me of coloring as a child. You had to hold your mouth just right to get the crayon color in the line. How I wish I could have experienced the joys of motherhood!

Afterwards we took another friend out for her birthday. Had a good meal, something I don't get very often anymore. Just can't afford it. The restaurant had  the KY Derby on tv. Of course, this is KY so they would have the derby on. The wait staff was taking bets among themselves.

We went to the friend's house and watched the derby. This is the first time I saw the KY Derby in KY.

Wasn't long after though we headed home. My body was already stiff with pain. By the time we arrived, I walked in the door, fed the cats and crawled into bed. Still took hours to fall asleep. Pain does that - keeps you from much needed sleep.

I don't miss the extreme heat and humidity of S. Alabama, but I never expected it to be cold in early May. The truth is the temp is perfect - no humidity, easy to breathe, no sweating. Wish the summer would stay this temp. It is the combination of cold and wet that hurts so much.

I feel down today, alone in the world. Every one's life is changing all around me, but mine only seems to change in the form of a worsening disease. So many times I wish I could go home, walk in the door, crawl into my old bed and feel the security once more. But there is no home to go home to - not anymore. No family. Friends I can count on one hand.

Today I wish I had the strength to stand in front of the sink and wash my dishes, but the pain is too much. I wish I could stand in the shower, but the pain is too much. I wish I could sleep, but the pain is too much.

Today I wish I could say life is so good because wonderful things are happening - but I cannot. The pain is too much. There seem to be too many of those days in my life. And today I am afraid of what might come if my illness gets worse.

Wednesday, May 1, 2013

May Day

It is the first day of May. Temps reached 85 today according to the thermometer on my porch. When they get into the 80's, my lupus gets stirred up again. Heat and cold - not my friends. But by Friday it will be 69 degrees, a break in the heat.

I know summer is coming and I'll have to spend more time inside. I've always been an indoor prisoner due to the effect of lupus, sun and heat. But recently I've found myself indoors a great deal. The pain patches are working, but their not miracle patches. The pain is still there - just numbed a bit.

I have to face the fact I'll be in pain for the rest of my life. It has slowed me down to a crawl. Standing at the sink washing dishes sets my back into spasms. My legs go numb from the top of my thighs down to the bottom of my toes now. I have grown use to no feeling from my knees down. I have accepted the fact the feeling will not return. I just wish the pain would go away!

At night I crawl onto my beat up mattress which also affects my back pain. Last night I couldn't get up. I woke up in a "dip", my muscles in a spasm, and had to twist myself out hoping to pull up and out. There was no one to help me no matter how hard I cried. Unfortunately, a cat cannot pull you up when you're in trouble.

It scares me sometimes. What will I do if I cannot get up, cannot reach the phone, and am stuck there?

Last year I bought a back massager. Work wonders! When I moved, I lost the adaptor. Had a spare adaptor, but it wouldn't fit. Seems as though you have to use THEIR adaptor!
http://www.walgreens.com/store/c/dr.-scholl's-soothing-5-motor-full-cushion-massager/ID=prod1015885-product

So now it sits draped over a chair.

My TENS unit doesn't work well either. It loosens the pain, but it only works while the unit is on.

The patches last for two hours. The pills last for five.

So what is the answer? I don't know. After eighteen years of suffering with systemic lupus, knowing there is no medication for it, no cure for it, etc., the only thing I can do is try the next thing that MIGHT work, relieve the pain.

It is May. I want to go outside and sit in the sun, but I cannot. Sun causes flares. I want to plant flowers, but my funds are devoured by the costs of medications. I can't afford flowers. I miss my mini roses. They had grown so big before I had to leave them behind.

My neighbor has planted peonies. I love peonies! Will have to enjoy them from the window.

I miss my sewing machine! It died back in December. Want to start a new quilt so badly, but my hands just won't hold a needle for a long period of time. Hate Lupus! Hate arthritis!

Time to pull the electric blanket off the bed again. I think warmer days are ahead. Thank Heavens! I actually turned on the fan this week. If I had been in Alabama, the fan would be turned on in early March. The air conditioner would be in full swing. I'm putting off the air conditioner as long as possible. There's one good thing about living in a freezing cold place in the winter - it is cooler in hot weather!

I hung out sheets and towels in the sun early today. Sandy's brother put up two lines when I moved. My neighbor has used the line repeatedly because she washes every day. I finally caught an opportunity where the line was empty. When I went outside to take them in, she was hanging out more wash. I would hate to have her water bill! Unfortunately, mine went up again! $68! I don't understand why! I'm back on the "look for a leak" watch again!

Shortly after I took in the sheets, one of the lines fell. She actually "wore it out!" I looked out the window a moment ago and her husband still hasn't put it back. Pretty sad when you wear out a clothesline that was strung with new line and tight as can be!

Oh how wonderful those sheets smelled! Reminded me of my childhood. I plan to use the line more so she'd better move over!