Thursday, April 30, 2015

While The Weather is Warm

I'd like to move back home to AL, but don't have the funds to do so. It is extremely important for me to be able to get to the necessary doctors and hospital due to the multiple health concerns I have. I can't do that in Wilmore. A thing as simple as going to the grocery store has become difficult.

If you can help, please use the paypal link on this page. Your gift would make a huge difference.

Sunday, April 26, 2015

Rainy Weekend

It has been a crazy rainy weekend here in Wilmore. At least Saturday was. But it was nothing like my former town, Dothan, AL. Tornadoes, storm damage, high winds, tons of rain. Someone caught a great video:

I love to listen to the rain. But over the years the pain is so hard to deal when the weather changes. Rain and cold together are unbearable. Watching the video of rain is the closest thing I come to enjoying it now.

We're still in the 60's here and 30's/40's at night. Hard to believe it is the end of April. I think the temperatures kept my tulips from coming up this year. I sure did miss them.

Weather is suppose to warm up by the end of the week -  into 70's. I haven't been physically able to clean my place for months and it needs it so desperately. This weather has been so rough on me and if I had the money today, I'd move back to AL tomorrow. I just can't physically handle it anymore. It hurts too much. How I pray for a miracle!

Poor Rascal! Wants some Temptations Mixups Surfer's Delights treats so badly. But I won't be able to buy anything until May 3rd. It hurts not to be able to give him what he wants. With groceries so low in my fridge and pantry, no money in the bank because medications were so expensive this month, and even if I did have money, I can't walk to the store to buy them. I've been terribly sick for three weeks and haven't been past the driveway (and then only to take out the trash). All the kitties' tastes have changed. Now they want Friskies Seafood Sensations in the blue bag. I can do without for myself, but I hate to make my furry friends do without, too. It has just been a long month. How do you explain to someone having to make a choice between food or medication if they have never been in this situation?

Here's hoping this week holds open doors, surprise miracles, and needs being met.


Friday, April 24, 2015

Medical Associates will MAKE You Sick!

Being chronically sick is bad - sometimes you just don't have a quality of life. You struggle day to day to maintain what you can and accept what you can't. 

The worst part for me is dealing with the individuals who have sworn to do no harm - the medical community. My rheumatologist's office contacted me by letter to let me know she would not be in the office. I had to call and reschedule my appointment. When I did, I found out they had made appointments on two different days. I guess that makes up for the many times they wrote the date on a card, handed it to me and failed to put it in the computer. Wouldn't it be easier to call the patient and reschedule the appointment over the phone instead of wasting paper and postage? 

Since I've been going there it has been a "Laurel and Hardy" experience. Medication refills not called in, refills sent in dosages for one month and filled for three (Not enough medication to get me through three months), wrong dates given, having to explain to the doctor where she wrote the prescription wrong and it takes twenty minutes to sink in. I'm more stressed out when I leave than when I walked in the door. 

Today it was billing from St. Joseph Hospital. They bill my part A insurance and then send me the remaining part of the bill. I have to call them and tell them to submit it through my part B insurance to get the rest covered. Happens every time. Calling them is an experience. You get one person who doesn't have a clue, one who is so rude that they try to make you feel as though it is your fault, and this causes you to have to be tough on the other end. Today I had to inform the man it wasn't my fault the business office can't seem to cover both ends before wasting paper and postage and stressing me out. So I keep a stack of papers from them, all bills sent after part A insurance. This time the bills, came within a week of each other. No time to run it through part B. Just makes me never to want to walk into another hospital again let alone have tests run. 

My mind tries to remind me I'm covered on these bills, insurance will pay. But I immediately go to "I have $15 in the bank. You can't get blood from a turnip!"

Yesterday it was my MD's office. I had filled out a form for a special kind of coverage, sent it to his office with a SASE enclosed for him to return it. I get a call from his nurse. 

"You know this form states if services are not available, placement in a nursing facility or immediate care facility for the intellectually/developmentally disabled shall be appropriate for this member. The doctor wants you to know what the fine print says before he signs it."

"I know. I also know this is for five different areas and I chose one. I don't fall into those categories and the service I chose doesn't either."

"Okay. He just wants you to know." 

While I appreciate him covering this base for me, if he had read the form he would have seen there are other areas covered including adults and children with brain injuries, long term services for those with brain injuries, long term services for intellectual and developmental disabilities. That is what the above statement covers. 

I don't fall into those categories at least not yet, but with the stress medical staff puts on patients it may not be long. 

All he had to do was read. Doctors tend to scan. It is simple common sense. 

Add a third stresser to the list. This isn't medical related, but it was stressful enough. Wednesday I received an automated phone call from a financial institution I did not recognize. They said my debit card had been stolen. I hung up and called my local bank. The person said she had never heard of the company, checked my account and said nothing was wrong. So I stocked it up to scammers.

Wednesday I receive a call from my local bank.

"We have noticed some odd charges on your account. Did you make a payment for ....."


Since the amounts were over $200 they did not go through because of the minuscule amount there. I asked her about the call I received the day before and she said it was the bank's automated warning system. Ok. The day before the woman had no clue. 

They cancelled my debit card and now I have to wait two weeks to get another one. The first person stated she would cancel it and request another. Knowing how things never get done, I called my bank again to make sure it was taken care of. Card was cancelled but other card not ordered. So I ordered it again. It pays to follow up again. 

I will never understand why people think they have a right to take/steal things from others. If someone was in need, I would give them what I had. But don't steal from me. Odd thing is I haven't been out of the house for three weeks. Haven't use my card in that amount of time. Yet it was stolen. This world is unbelievable!

I've experienced the other side of kindness most of my life. What I mean is I've experienced people who steal, lie, take advantage of you, treat you badly. If you put kindness and nastiness on a scale, the second would win out. It has beaten me down over the years. Sometimes I wonder if I will ever be able to pull myself up again. 

I'm stressed, frustrated and tired of being bullied as an adult. Childhood and teenage years were bad enough. Life is hard enough without having someone make it harder. 

With stress comes lupus flares. People can literally make me sick and have done so. What is truly sad is when the medical field makes you even sicker. 

Monday, April 20, 2015

If You Have A Hard Time Sleeping At Night from Pain

Read this story. It is worth it.

I have suffered for months with the inability of sleeping at night more than a couple of hours at a time. It has taken its toll on my mind, body and soul. Sometimes I wish I could wear a sign saying "Leave me alone! I'm in pain!"

When you have a chronic illness with chronic pain, you get a lot of free advice you never asked for in the first place. It gets old quickly. However, you run across some pieces that actually help. This is one. Hope it helps someone who is suffering and someone who loves to evaluate people who are suffering.


Sunday, April 19, 2015

And The Rain Came Down

Wilmore has received a ton of rain the past couple of weeks. Today hasn't been much different. With yesterday being sunny and 80 degrees, it amazes me how quickly it can change on a dime. We're back in the 70's with rain. This week will be temps in the 60's again.

Living in a brick building insulates the sounds outside. Today I had the front door open when the down pour came. Oh the sweet sound of rain! No matter how badly it wreaks havoc on my body, I still love the sound of rain. So soothing. Brings back memories.

I am transported back to childhood where growing up in the country allowed soothing sounds like rain flowing through trees and crickets singing at night. My heart smiles when I think back on those days.

I remember rainy days on Laurel Ave when the cool rains subsided the hot humid temperatures if only for a short time. And when the heavy rain turns to light showers, I remember looking out the window to see a line of birds waiting their turn to jump into the birdbath sitting on the ground near the big bush. The next bird in line pushed the one in the bath out so that he could take a dip. And so it went one bird at a time until the line was gone and every bird had their turn.

Now birds just brave the rain to snatch dry cat food out of the bowl on my porch. They simply don't understand how bad this food is for them and continue to eat until every morsel is gone.

 As quickly as the rains came, they subsided, just like storms in our lives. So hard to see through the black clouds especially when the rain is beating you into the ground. But it eventually stops and only a distant thunder rumbles in the distance. It leaves behind a ray of hope for better days.

Saturday, April 18, 2015

When Life Gets Hard

Life has been hard around here the past few weeks. Anyone who suffers from a debilitating disease (plus its additional illnesses added on for good measure) knows how difficult it is just to do simple things like wash dishes, take a shower, dust, etc. It has been extremely difficult to do those things plus many more the past few weeks.

I am a firm believer in the quote "actions speak louder than words." Since there hasn't been much action among people in my life, since I don't have any family to turn to in time of struggle, I just stop. I literally give up and withdraw into myself. It is the only way I know how to handle people who talk a good talk but don't walk it.
Note to Self: If I ever know someone is suffering and cannot get to the medication they need, if I have the means and way of getting it for them, Heaven help me if I don't get it and take it to them. I would have been so thankful to have a bottle of Anbesol in my mailbox this past week when the infection spread from my bad tooth all the way to my ear. If I ever know someone needs something and I do nothing to help, someone remind me of how horrible it is to suffer and be unable to ease the pain. Infection from a bad tooth spreads quickly. It can spread to the heart causing infection there. A friend's niece had infection from bad teeth when she was young. The infection spread to a part of her leg. She had to have surgery. The worst part is suffering in pain and not being able to rest and recover.  Small acts of kindness such as a bottle of tooth numbing medication without the expectation of praise and thank you mean so much. I have been unable to walk across Wilmore to the store. I finally ordered a bottle in the mail. It came yesterday and the pain was eased. It cost an extra $5.00 to ship it.

I've learned God created love in many different ways. His mercies run deep. His creation is great. Even the furriest of His creatures have compassion. When I am so sick I can't sit up in bed, Rascal and Bitty crawl in bed with me. Their comfort comes in reverse petting and sweet purring.

On days and weeks when I suffer the most, they never fail to stand in for the lack of kindness humans fail to share.

It has been a teary week. Yesterday especially. When I turned the corner to walk into my bedroom, I found Rascal curled up on my bed. He was smiling his crazy cat smile. Fifteen minutes later, he was still smiling that smile allowing me to take a photo. I couldn't help but to laugh.

Sometimes four legged friends are by far better than the two legged ones.


Thursday, April 16, 2015

So Tired

God please help me.

Monday, April 13, 2015

A Horrible, No Good Very Bad Day

It has been a horrible day/weekend. Lupus has decided to produce ulcers in my mouth. Infection has spread into my right ear. Set into my teeth. It hurts, hurts, hurts!! Top it off with physically being unable to walk to the store downtown to purchase toothache medicine (the only thing that seems to ease the pain and heal the sores). I haven't slept, haven't rested, unable to eat or drink without suffering from pain.

Add to it receiving a hospital bill for $208.00 from the breathing tests. Insurance paid over $800 and left me with the rest. It might as well be $208,000.00!! So stress from worry has set in on top of the pain.

I've been dizzy and nauseous all day. Rain is coming in bringing with it the vice grip of pain. Lupus has totally wiped me out.  It is on days like this I'd rather not be alive, confined to just  breathing in and out.

This weekend I read the book,  The Mockingbird Next Door. It was written by a woman who spent time with Harper and Alice Lee. A wonderful story of sister love. Many wrote negative comments about the book, but this time I decided not to believe them. I'm so glad I did! It was beautifully written and shared. I was deeply touched by the love these two sisters shared, their struggles and what a difference they made in the lives around them. Harper Lee wrote To Kill A Mockingbird, one of my most favorite books.

The author suffers from lupus as well. She shared times of her pain, wipe outs, struggles. So thankful to connect to someone who shares the same sufferings I do. When you are alone, have no support system, cannot talk with others who suffer, you begin to wonder if this is the norm for this horrible disease. When someone else shares the same suffering you do, you know for sure this horrible disease wreaks havoc in ways you never dreamed. I am so thankful for her sharing as well.

I sit on the loveseat feeling numb inside. The pain has been overwhelming the past few days. My body screams in agony. All I can do is wait it out and pray tomorrow will be a better day. I read in a pamphlet received in today's mail from the hospital I use an article dealing with pain and rain. They said there was no proof rain brought pain in people with chronic illness. Obviously they have never suffered this kind of pain when it rains. The barometric pressure and humidity together act as a vice squeezing on every joint, every inch of your body, until you cannot stand it anymore. It amazes me someone in the medical field was so ignorant in sharing such a story. Those of us who suffer tremendously when it rains or when the weather changes from one extreme to another assure this doctor it is very real. Until they suffer the same they will never know the pain.

I am tired of horrible, no good, very bad days. I hate having to deal with bills I cannot pay, pain that is unbearable, and dealing with all of it alone. I've reached the point I don't know when to go to the ER or suffer it alone at home. Most of the time I just suffer at home alone. One day I may misjudge the time to go to the ER and find myself too sick to cry for help.

I'm tired. So very tired. Oh sleep where are you?


Saturday, April 4, 2015

Simply Take For Granted

Daily I am amazed at how much we as individuals take for granted. Get up, shower, dress, eat breakfast and run out the door to work and school. Rarely do people think twice about the little things of life until they are put in a position where they can't do something. Simple little things we take for granted every day.

Today I went for a quick lunch, to a movie, and grocery shopping. It was the first time I had been past my driveway in two weeks. Most of the two weeks I was bound to my bed in a very painful lupus flare. My joints were swollen, had a high fever, felt like I had the flu. So when I have the rare opportunity of eating out or seeing a movie, I take it. Even grocery shopping has been reduced to once a month in my house. I just can't do what I use to do.

We saw "Do You Believe" at the theater nearby. I'm glad they're making Christian movies. I recommend seeing this one. I am amazed at how two people can see a movie of any kind and get completely different info from it. I saw the message of the church needing to take loving, caring, and sharing outside the church walls. In my experience the church has become an entertainment center, filled with sermons containing "I, I, I and me, me, me" in them, a feel good experience. I use to count the number of times the preacher would say I and me in his sermon. I read an article online from the newspaper where I use to live. The front page story spoke of how the church has changed its approach to bring in people. They are using concerts instead of worshipping. They are choosing contemporary music instead of hymns, they are avoiding the Bible and focusing on the "audience." When did the church turn so worldly? When did God's house of worship become a "campus?" When did "feel good sermons" overtake the truth? Does it have to become worldly in order to bring in the world?

I find it difficult to sit for long periods of time because of the pain in my back and legs - side effects from systemic lupus damage. So I search tv for Sunday worship. Not much out there that doesn't fall into the worldly category anymore. I only watch ministers who teach straight from the Bible, no I and me marathon.

When we went grocery shopping, I bought enough food for a month. When it is gone, it is gone. Several times I thought I'd pass out just trying to make it down the next aisle. Some ask why I just don't use a motorized cart. I don't want to take it away from someone who is on oxygen or struggling more than I am. So I walk awhile and stop. Walking in general has become so difficult. Shortness of breath, chest pains, etc. slow me down. I just cannot walk far anymore. Something I use to take for granted. Don't take it for granted.

In order for me to make it out the door, I had to get up two hours early. It takes that long for my joints to loosen up and move and for me to find the strength to accomplish things I once took for granted. Every bit of strength used cannot be restored throughout the day. Once it is gone, it is gone.

Please read "The Spoon Theory" here:

I'm trying to unwind and loosen the pain before I go to bed. As I click through the channels, I hear a news anchor say, "It is great to send prayer, but what about action?" She was referring to the Pope and his response to the latest Christians murdered. In my world, I say the same thing. I appreciate prayers, but has it become a way to not get involved in a person's life by saying "I'll pray for you" and keep going? I believe it is as much a sin to know there is a need in someone's life and do nothing to meet it. With a society so consumed with their own families, work world, and entertainment needs, what happens to those who have no one? And yes I believe missionaries are important, but it is just as important to meet the needs of those in your own backyard. Can you imagine what a huge difference it would make if people put all their sports enthusiasm into caring for the neighbor next door? What if they turned their love for basketball or football into compassion and love for the hurting people around them?

I don't talk much when I am around people. Mostly because they just don't get it. When I say I don't fit in, they say, "Sometimes I think I don't fit in," as they hurry on to their job, or church activity.

When I say I am alone, they say "I feel alone, too" as they hurry off to the next event or say they're heading out to see their children. When I say I am alone, I am alone. When you are alone at holidays, alone when you are in the hospital, when you turn on the tv during the day just to have some human contact, then you will feel alone.

I took for granted my family when they were alive. No matter how hard it was, how many problems we faced, how many struggles we lived through, there was someone who loved me regardless. I truly believe people don't care anymore, at least they don't care outside of their own families. Personally I can count those who do on one hand. Now before anyone jumps down my throat because they don't agree, just remember, you don't walk in my shoes. Your experiences have not been mine. This blog has been my life experience.

Sometimes I find myself holding on by a thread. Today is one of those days. It has been one of those weeks. I'm tired. I'm weak and worn.

When I feel my worst, Little Bit will crawl into my lap and purr. Rascal will curl up next to me in bed so that I feel another living being. Buddy will spend the day on the porch just waiting for me to love and pet him. Thank God for His beautiful creation in animals. I wish more people would appreciate them. The one God who breathed life into us also breathed life into his animal creation.

I am so thankful for His loving touch through them.

Friday, April 3, 2015


It has been very rainy in Wilmore this week. My pain has increased ten fold and it has been very difficult to breathe.

When I woke up this morning, I found the toilet not flushing. Then I walked outside to feed Buddy. Found the sewer gushing in front of my apartment. I knew then it would be awhile before I could flush.

I think Rascal had the best idea all day - better to stay in bed and wait it all out.