Friday, January 31, 2014

How Do You Say It?

The other day I was treated to a "belated" birthday lunch from a friend who brought a friend with her. She was sharing how encouraged she was by her friend who was always cheerful and positive even though she is losing her sight and is struggling with things in her life. After comparing herself to her friend's struggles, she said she really had nothing to complain about. Her friend was always joyful and she wished she could be that way.

I knew part of her sharing was directed toward me. I'm not one to jump to the positive. I never said anything, just listened. I knew anything I said wouldn't make a bit of difference.

So how do you explain to someone that every life is different and every struggle isn't the same? How do you tell them life is so much harder when you are alone in the world? How do you explain to someone what it feels like to be totally alone at Christmas while they are surrounded by family and being told they are loved? How do you explain to someone that you may go a week and not see another living soul when you are sick because you are alone?

I have always believed if you are loved you can do anything. You are given love and give it to those who come in contact with you. Imagine it this way: when your car runs out of gas and you're running on fumes until you can reach the next gas station to fuel up. The gas is love. Once you fuel up, you can go and go and go until it comes time to fuel up again. Family, friends, husbands, children, etc. are the fuel. It is amazing what you can do when you have the fuel of love, when someone believes in you.

When you're alone in the world, you don't have those "gas" sources to fill up your tank. You also don't have the security wall to block you from many problems that life brings. Instead you have to deal with every bad, unexpected, struggling, etc., moment in life on your own. No husband to deal with it. No children. No mom or dad. Just you. It takes its toll.

Yes, I believe in God and His love. It is healing and enduring. I also believe He didn't make us to be alone, but for some reason a few of us are left in that predicament. So if we are not "Mary Poppins" cheerful, don't pass judgement. You have no idea what we might have gone through that day.

With our society turning more toward computers and cell phones, people don't even stop to say hello anymore. Few even look at you when you're out in public. I learned a long time ago people are more interested in how they look than what you are wearing. I explain it as the "invisible society." I feel invisible. I've sat in a room with two other people and listened to them talk for two straight hours barely saying a word to me or allowing me to get a word in edge wise. I felt more alone when I left than when I had been home for two days straight.

Slow down and listen. I've encountered people who are so busy talking about themselves and what they are doing that they didn't hear one word you said. When they leave, you feel as though you've been hit by a tornado. Actions DO speak louder than words. Don't waste so many words!!

Back to the person I was speaking about at the beginning of this post, she is married, has a daughter who is grown and out of the nest, but doesn't have to face the world alone. She is loved. I'm thankful for her being loved.

Sometimes I just want to say to every person I meet, "Are you loved? BE THANKFUL!"  After all, no one wants to hear about bad things like being alone in the world, fighting problems all of the time, struggling with medical issues, and least of all being alone in the world. They want Mary Poppins. Sometimes so do I.

 

Thursday, January 30, 2014

YIKES!!!

Opened my electric bill today. It went from $30 to $100! I'm so shocked because I have gas heat, not electric! I cannot begin to imagine what the gas bill will be! I can't afford to be warm. Looks like this girl will be turning back the heat and wrapping up in blankets again. With such a small income, rent, utilities (electric, gas, water, sewer, trash pickup), come first and then medication refills, and whatever is left goes to food. When you start with little amount of money to begin with, that doesn't help at all!!

What amazes me is I sit in the dark and watch tv. I microwave instead of use the stove. So where did the electricity spike come from?! It has to be paid so the money will come from food and whatever meds I can cut in half in February.

I'm thankful to have a roof over my head and clothes to keep me protected. I'm thankful for warm blankets to curl up under. I'm thankful it will be warming up for a few days. I'm thankful for candles- candlelight is beautiful and economical!

I'm not the only person in this boat.

Wednesday, January 29, 2014

Another Cold Winter's Night

It will be 4 degrees tonight. Thankful we're not in the minus stage. Thankful it will warm up a bit for the rest of the week. It is so cold in my apartment when the heat isn't running, but it costs money I don't have to run the heat. So layers, heated blanket and a cat have to do the heating work.

I was remembering the day of my mother's funeral, January 21, 1985. She died two days before my 24th birthday and was buried the day after. It was a horrible time in life. It was also terribly cold. We didn't know if we could have the funeral that day because the ground was frozen and they didn't know if they could dig a grave. All in all, we did and they could. I looked up the weather in SE Alabama for that day. It was 4 degrees. In the old cemetery where she, my dad and brother are laid to rest on the top of a hill, it is even colder! I cannot begin to imagine how truly cold it was that day. I was numb and cannot remember much. It is recorded as one of the coldest days.

Today I woke up annoyed and ended the day stressed out. By 5:00 pm, I had received ten scammer calls, all fake numbers, all "name unknown or Unlisted number." They started at 6:30 and called every half hour. I gave up trying to rest even though I am so exhausted.

With lupus, the exhaustion is one of the worst symptoms of a flare. You feel like a wet rag wrung out and hanging on a line. A nap or even a full eight hours of sleep just doesn't renew your strength. You just feel wrung out. You can't function. You feel horrible. This has been the past couple of days in my life. But today has been the worst one. Stress is a contributing factor. All I want to do is sleep, but I'm too exhausted to sleep. All I want to do is be pain free, but I hurt from my hair to my toe nails.

My thinking has slowed to a crawl. I want to write, but I cannot concentrate well enough to produce enough creativity to produce thought.

I refilled an antibiotic last week because of an infection. Still can't find the bottle. Can't remember where I put it. But I know where the card is Kevin Spacey sent me last month. I can see it from where I sit. It is a reminder of his kindness.

Had to look at the calendar today to see what day of the week it was, terrible! I'm just tired. Wrung out and hung on a line tired. How I hate you lupus, but I'm stuck with you. You're like a bad neighbor who won't move, a family member who keeps returning like a boomerang, a headache that just won't go away. I may have to deal with you on a day to day basis, but I won't let you define me.

There is hope for tomorrow.


 

 

Tuesday, January 28, 2014

A Week Has Passed

A week has passed since I posted to this blog. With my best friend here, we've stayed pretty busy. It was a nice treat for me. I don't get out much. She told me what she wanted to do each day and we did it. We hit discount bookstores, thrift stores, went to two estate sales, but my favorite was going to Amish country near Danville, KY and Liberty, KY. Such a beautiful area! We stopped in a dry goods store where two beautiful little Amish girls looked at us as if we had horns growing out of our ears! I'm sure it was interesting to them since I was walking with a cane and Sandy had a boot on her foot reaching up to her knee! Then stopped by a kind and friendly family owned store where we visited six years ago when I had my college reunion. Such nice wonderful people!

We braved the cold, the icy roads, the blowing snow. I was able to buy a pair of GOOD, warm, non-skid shoes, something I desperately needed. I've been in KY for 1/12 years and never had the opportunity to buy a decent pair of shoes. Sad really.

Sandy made last week a "birthday week." We ate out at different restaurants at lunch and cooked at home at night. Was so nice to have her here.

Sunday night I closed the guest room door. About 3:00 a.m. on Monday morning Rascal was beating on the door and meowing to the top of his lungs. He was searching for her. He spent Monday searching for her. I know he gets tired of having no one visit him.

Sandy left for S.E. Alabama Sunday morning, the day it warmed up a bit. We heard in the news that ice and snow was headed for that area Tuesday night. Yep, it followed her home! It was a rare occasion that it snowed in lower Alabama, but always a treat. The only bad part was the power lines going down, no electricity or heat, and the icy roads. Everything closes down. I heard from her today. Businesses are closed up for Wednesday. As she was driving home tonight, there was ice hanging on the stop signs.

Two friends from the Bible study I attend here in Wilmore treated me to lunch today for my birthday. We went to a tea room in Lexington. Such a nice treat. Afterwards we went to a second hand furniture store and walked around. By the time I crawled back into the vehicle, I could barely move. On the way home, I could barely keep my eyes open. My body was finally shutting down.

I walked in the door at 2:00 pm today, called a friend and told her I was just too exhausted to come over, crawled into bed and slept for four hours. Last week I just pushed myself. Once I let go, my body collapsed. I fought fever after fever, severe joint pain, trouble breathing last week, but kept going. Today I hit a wall.

Time to stop, stay in bed and recover before another lupus flare sets in. I hope I caught it before the roller coaster ride begins. It was worth it all!

KY Sunset
 

Tuesday, January 21, 2014

Snow Beautiful SNOW!

Every year I ask God for one thing on my birthday: SNOW! Never get it. Yesterday we had a heat wave - it was 48. But when I woke up this morning, there was tons of glorious snow on the ground and still falling from the sky! SO beautiful! So clean and pristine! The wind is blowing and the snow is being tossed to and fro outside . Makes it look like a blizzard! Oh glorious snow!

My best friend in all the world is here for a week. Yesterday we went to Wallace Station for lunch with Julie and Chris. Nice treat and nice place. Later Sandy and I stopped at Appleby's for a light dinner and stocked up on groceries at Walmart before the storm set in.

This morning we awoke to a beautiful three inches of snow. BEAUTIFUL snow! It snowed most of the day. COLD COLD COLD! We wandered into Lexington, ate lunch at Ramsey's and then went to the Lexington Library on E. Main to browse the bookstore downstairs. Was a nice, COLD, busy day.

We're in for another bitter cold week. The snow will stick around for awhile. I stuck a ruler in the yard before we left. Measured three inches. Should have seen the snow drifts along the road.



 

Sunday, January 19, 2014

Birthday Thoughts and Kevin Spacey

I watched the SAG awards last night. Knew Kevin was nominated so he would be there. He also presented so that was a nice treat for me. Yet again they gave the award to the actor whose show was "retired." Kevin - you're still a winner to me!! Looking sharp in that tux!

http://sagawards.tntdrama.com/videos/category/20th-annual-red-carpet/620



Another year will pass in my life on Monday the 20th. I'll be 53. Hard to believe. The year I was diagnosed with systemic lupus, I never dreamed I'd make it this far. Been through a lot of trauma through the years with the loss of my family members, my health, etc., but have learned compassion, caring, kindness. Now if I could only learn patience with people who have not learned these things.

Take each day one at a time. Be thankful for at least one thing before you close your eyes at night. Reasonable goals I think.

Thursday, January 16, 2014

YIKES!

Okay, I NEED a new mattress!! Mine is sagging so badly. And do I have the funds to get a new one? No. It seems Rascal is the only one who can sleep on this old mattress without his back going out. Cats are lucky like that! Add to my birthday wish - a new queen size firm mattress.

Still wishing for for beautiful mini yellow rose plant. Missing mine so much.

 

Tuesday, January 14, 2014

What A Day!

I am utterly amazed at how ignorant customer service people are! Today I spent four segments of time at 30 minutes each trying to "return" a call from my pharmacy. Three times it cut me off. The fourth time I finally reached a person - a foreign person who could barely speak English. He "put me on hold" to find out why I called and immediately cut me off.

Tonight I tried again. Long wait but finally connected to a person. They just wanted to know if I wanted my medication refills. Never mind they were due. Never mind I tried to do this through the internet. This took an hour and I still don't know why the anti inflammatory medication wasn't accepted. In fact, it wasn't even listed on my account anywhere. No letter explaining why. The service person only said, "Huh." As I've said many times before, "I'm Sorry" goes a long way when you use it.

Stressed out by all of it, a fever set in tonight. All of a sudden a flush of heat radiated through my body. I'm up to 102 degrees right now. Stress and lupus don't mix.

It is hard dealing with illness when you're alone in the world. It is even harder dealing with people who have no clue as to what they're doing and don't care if they do it or not. Yesterday it was the doctor's office and insurance company. I left a form with my doctor's office last Thursday for him to fill out and mail into my insurance company. I called yesterday to see if it was done. They said he was out of town until Wednesday, but it is on his desk (buried under a mound of papers). I explained how it needed to be done asap because the insurance company was sending me second notices. I understand he is out of town, but I made sure it was up front and ready. Of course, I'll have to call back at the end of the week to make sure it was done.

Try to make the insurance company understand the doctor is "out of town." No matter how many times I repeated to the customer service person, she just wouldn't understand I couldn't pull it out of a hat as though it were a rabbit! After ten minutes of this back and forth, she finally got it and made note on my file. More stress!!

Sometimes I wish I had someone in my life who would stand between me and the stress of customer service dealing with health care, doctors and insurance companies. But there is no one. I'm stuck stressing through it. It scares me to know one day when I have no mental faculties about me that they will be even worse to deal with on a one to one basis.

I had a dream once about someone in my life. He gave me a cell phone so that he could keep up with my daily health conditions, took care of doctor appointments, made sure I was being treated properly with much needed therapy and medications, and sat beside me through it all. But is was only a dream. Wouldn't it be great to have this one come true?

I'm turning 53 next Monday and I cannot help but wonder what the year holds. Just now recovering from Christmas alone, I don't want to look forward to anything just now. I'm tired. After all it is just another day.

Saturday, January 11, 2014

My Favorite Kevin Spacey photos

Except for my personal Kevin photo, the following are my favorites:

http://www.peoplepets.com/people/pets/article/0,,20697550,00.html



 

WISHING FOR ROSES

Just wishing for flowers. As much as I love Winter, I miss flowers.
Someone asked what I would wish for on my birthday this year. I'd love to have a mini yellow rose bush (tea roses). I had a beautiful one I had to leave behind in Alabama and truly miss it. Cut flowers don't last. Mini rose bushes do!

http://products.proflowers.com/flowers/Potted-Yellow-Roses-43183?ref=homenoref&viewpos=1&trackingpgroup=prp

Friday, January 10, 2014

The Joys of Having Lupus!

ANOTHER infection! Saw the doctor Thursday and was put on antibiotics - another pill I can barely afford. Since Obamacare kicked in, medication costs rose. So now I'll be deciding on food or medications and which ones I can refill each month. Such joy!

When the weather is extreme - from freezing cold to warm and rainy- my joints swell, I run fever and hurt all over. I'm so tired of living life from a bed. After two weeks, I still can't walk on my left foot. The sad thing is I've seen two doctors and neither one offered help to find out what's causing the pain. So like most doctors, they just blame it on lupus instead of x-raying it for fractures, say "I'm so sorry you are in pain" and then allow me to "walk" out the same way I walked in.

I wonder. Are there any doctors out there who will do whatever they can to find the source of the problem and treat it instead of just pushing pills I cannot afford and that don't work?

Feeling low today with so much pain and swelling.

Tuesday, January 7, 2014

SOMETHING TO THINK ABOUT


STILL A FROZEN TUNDRA AND BIRTHDAY THOUGHTS

It is still a frozen tundra around here. We soared to 10 degrees today with a -20 wind chill. Forced a man who broke out of prison to turn himself in in Lexington. Was too cold out there!

Now the weather turns the other way - up to the high 50's by the end of the week. It is the yo-yoing that makes me so sick and puts me in bed for days. So hard to function when you're in so much pain.

The birds bombed my front porch again, but instead of being able to sweep it off, it froze to the porch. Another day. They keep stealing my dry cat food. (can't put out canned - it freezes too quickly).

It was so cold today that trash pick up was cancelled along with all schools and some businesses. My trash is literally frozen to the can.

Another doctor day on Thursday. Still can't walk on my left foot and wonder which doctor will finally find the solution to the problem. It seems that those covered under medicare are the most neglected of the patients. Most of the doctors don't spend enough time with you to find out what's going on.

It is another day indoors. The walls are closing in on me even though Rascal and I have spent most of the day curled up underneath an electric blanket. I woke up with a lupus rash across my face. Fine timing - the week after my rheumatologist exam.

I am no different than any other person. I long for purpose in my life, want to be part of a family, feel loved. But with illness(es) come isolation, rejection, neglect. Sad thing is I'm not the only person out there who is in these circumstances.

I think back to my birthday last year. I received one birthday card. While it meant the world to me, I still felt alone. I hate that the internet has taken the world of warm wishes and kindness away from people. Stamps may cost more, but well worth the effort and cost to send a birthday card. I make sure to do this for people I know. It means something to be thought of on your day.

My day is shadowed with bad memories. My mother died Jan. 18, 1985, two days before my birthday. I spent my 24th birthday in a funeral home and then she was buried the day after. Will my birthday become another day to sleep away (the pain)? Will my calendar days be more blurred from the pain of being alone in the world? Note to self: never let someone's birthday pass without sending them a card.



 

Monday, January 6, 2014

YIKES IT IS COLD!

With the temperatures at -1 degree and the wind chill approaching -20, it is cold outside! I stepped onto the porch to check the thermometer. My hair was wet. When I stepped back inside, my hair was frozen stiff!

Now the electricity is popping on and off every time the heat comes on. Wilmore people must have the heat on full blast! I think it is because my neighbor next door is washing clothes. Not a good thing to do when we all need heat!

Rascal and I are banding together underneath the electric blanket. I begged the outside cats to come inside, but none would give in. So I took a couple of storage bins on the porch. They have a hole cut into the side for easy entry and warm blankets. The porch is under a shelter so they should be okay. I already have two residents curled up. Just can't bear an animal freezing or starving. Will go back outside to check on them before going to bed.

Haven't  been this cold since my senior year in college! I remember the temps dropping to -20 degrees with snow on the ground, just like today. One of my favorite memories is watching two friends sitting outside the dorm waiting to grab and roll girls in the snow.

Amazing it was 57 degrees yesterday. Now there is frozen snow on the ground.

Here's a sad thought - I'm getting use to be alone in Wilmore. I had hoped moving would have changed that part. People are the same no matter where you go. It was worth it to get away from the crime in AL.



 

Thursday, January 2, 2014

A New Year

It is a new year. The whole world has hope at this point in time. It is suppose to be a time of new beginnings. But if you have a chronic illness (or multiple ones), you carry them over into the new year. I spent New Year's Eve alone and slept through the midnight hour. There is an old wives tale that says whatever you do on New Year's Eve, you'll do the rest of the year. I surely hope not!

Went with friends to see "The Hobbit part 2" yesterday. Ended up sitting alone since we arrived so late. There weren't any seats together except the top row and I cannot climb steps. My joints are inflamed. My foot still swollen and painful. Even though I have no feeling in my feet, I can feel the bone pain.

 I enjoyed the outing, but it put me in bed today. I even slept through the first snowfall. So glad it snowed again! The temps outside are suppose to be 10 degrees tonight and in the minus temps next week. I can hear the wind howling outside the window. Thanks to a friend, I was able to get a new heater this Christmas. Of course, it is in the bedroom with Rascal right now. He's the smart one - still curled up underneath the sheet and on top of a heated mattress pad.

I realized yesterday that I will turn 53 on Jan. 20th. Never thought I'd make it this far. With each year has come a weakening of my system. But I am here for a reason, or many, whatever the Lord wants. I learned a long time ago that you're not going anywhere until it comes your time. It is nice to have that peace of knowing where I will be after this life is over. I never will understand why atheists are so angry at Christians who only want others to have the same peace.

Since it is a new year, most people focus on themselves - lose weight, eat better, get organized, etc. Please never let me focus on myself, but on what difference my life can make in someone else's life each day. This has become such a "self-centered" society. Lord, please don't let me become self centered when there are so many people who are hurting, need someone just to listen, or give to them their needs. It is called compassion and kindness.

May your new year make you think of others. Make a difference in someone else's life instead of your own.