Saturday, May 31, 2014

A DAY IN THE LIFE OF SMALL TOWN AMERICA

You know you live in small town Wilmore, KY when the highlight of the day is watching the steam passenger train come through. I want to ride a train before I die!

 
 

Wednesday, May 28, 2014

Still Being Thankful

It has been a highly stressful weekend! Still suffering from vasculitis. The blisters/sores it has produced now are infected. But I am so thankful for Neosporine! Hoping it will heal the mess they are in. After buying the prednisone and neosporine, I now have six dollars in the bank. June 3rd is still a week away! Geesh! It has been a long, expensive medical month!

I'm thankful for my friend, Chris, who drove from Lexington to take me to the ER and stayed with me. It is always stressful to go to the ER. Seems like it is even more stressful to go to the one in Nicholasville!

I'm thankful for my friend, Julie, who shared her bounty of leftovers from her catering this past weekend. As it was, I was eating canned peas, eggs, and whatever else I could scrounge from the cabinet.

I'm thankful for the mailman who knocked on my door last Friday and offered a home for the kitty who was thrown away and I am feeding. He brought me a huge bag of dry food. An answer to prayer! Kindness still exists in this world and you have to be thankful for it when it comes.

I'm so thankful for my friend, Mark. Never would have made it without his help and encouragement. True treasures are a lifetime gift.

With the heat and humidity arriving in Wilmore, and since it affects my lupus so much, I've withdrawn inside again. Today I turned on the air conditioner. With the temps going up, so will the bill.

The old saying,"Misery loves company" is not true. I am still miserable. There is no company when you are sick.

Sunday, May 25, 2014

Emergency Room Visit - What A Waste of Time!

I'm miserable, swollen, huge sores that are now infected. Went to the ER this afternoon. Saw three different people taking paperwork information. One person touched me - the nurse taking my blood pressure and temp.

The doctor walked in and asked why I was there. I showed him the huge sores, infected sores, and told him I was told it was vasculitis two years ago. I asked him if he thought so.

He said, "I have lupus, too, and I'll just give you prednisone. Always makes me feel better." Really??? Two minutes at the foot of my bed if that long. Never examined me. Never touched me.

I spent the next hour waiting for someone to come into the room. She had check out papers with a prescription for 50 mg. tablets of prednisone, something I've never taken at once! Told me that was it.

I then had to wait longer to get my insurance cards back. No one came in so I went to the desk. No one even looked up at me when I tried to get their attention. I finally found my insurance cards and left. Unbelievable!

I filled the prednisone and broke up the huge pills into pieces. Bought some neosporin and hope that helps the infection.

NOTE TO SELF: the Va Hospital isn't the only one ignoring people!

2nd Note to Self: NEVER go back to the ER in Nicholasville again and pray ambulances will drive to Lexington in case of an emergency!

Saturday, May 24, 2014

To the ER Or Not?

I was in so much pain last night that I knew I had to go to the ER today. Instead I woke up and suffered it out. These horrible lupus sores or vasculitis sores or whatever are really getting to me! If I go to the ER, will I get the "put a band aid on it and go home" treatment or will I end up with a doctor who actually knows what is going on? I've had way too many band aid doctors in the past.

So I suffered it out. Tried to sleep, but just couldn't. My neighbor is having a graduation gathering next door. Lots of traffic and door slamming going on. Suppose to end at 10:00 p.m. so I'll just try again.

I always keep a record of "flares" so here's the photos. If you recognize this, please let me know. And no they are not ant bites or bug bites of any kind.




 

Friday, May 23, 2014

My Faith in Humanity is Renewed!

Today my faith in humanity was renewed. My mailman knocked on my door and said the following:

"I noticed all the good things you've done for the cats around this neighborhood (both feeding and putting out shelter in the winter) and wanted to help. There is one who is quite loving that I'd like to have fixed and hopefully keep or find a new home for her. I try to help animals myself and have a couple of dry food bags my cats won't eat anymore. Would you like them?"

This came at a much needed time in that I've run out of funds for the month due to the cost of my medications. I gratefully took in the dry food.

We decided he'd come get her on Wednesday afternoon and take her from there. I was worried about her since she is obviously a girl and would soon reproduce at some point. She's a sweetheart. Every time I open the door, she's at my feet just wanting to be loved.

If the neighbors in the building over would stop bringing cats home and just ignoring them, there wouldn't be a big population of cats. My mailman said he rescued a cat from an apartment that was now empty. The cat was abandoned there. Breaks my heart.

Today God showed me there is still good in the world and in people who care about His creation. Now if my next door neighbor would stop telling his young son that he hates cats, dogs, birds, etc. we will be just fine. Personally I have no interest in people who work their way up the education latter simply to gain the next degree. I have more respect for a person who shows respect for God's creation and those in need. It is that person who cares enough to not only show compassion, but do something about it.

Thursday, May 22, 2014

End of the Month Blues

It is the end of the month yet still too much month left. Too many medication refills this month. They took what I had left.
Will I make it to the end? Where is that penny jar! Lupus is far too expensive an illness to endure!

Still suffering from vasculitis. The break out sores are the size of a silver dollar now and hurt so much. Will be so glad when they dry up. But for now the breaking out still occurs.

Stressed out? YEP!

Thursday, May 15, 2014

Scratching Misery!

I'm in "scratching misery!" There are now 25 itching sores scattered all over my body due to vasculitis (inflammation of the blood vessels). Driving me crazy! One heals up and two more break out! So thankful we have a break from the heat At least sweat isn't irritating the break out.

Now if only I could sleep!

Monday, May 12, 2014

Suffering!

It has been a suffering weekend. I started breaking out in itchy bumps that soon turned into sores. The last time this happened I was diagnosed with vasculitis, which isn't a good thing. I told my GP about it and he said, "that's for your rheumatologist to deal with." Since my rheumatologist is only in Lexington a couple of days a week and hard to get an appointment with, I'm suffering. So tired of scratching. Quite frankly I'm tired of only going anywhere when the anywhere is a doctor's office or a hospital for tests.

It has also turned to "summer heat" in Wilmore which hasn't helped. Heat and cold have an adverse affect on my body and lupus flares. I don't look forward to summer. Heat has always had a bad affect on me. It also affects the medications I take for this horrible disease.

I read an article about talking out anger and frustration about this illness. When I try, most people just hit me with advice and reasons why I'm sick in the first place. I get so aggravated that I just shut up and internalize the stress. I know it isn't the right thing to do, but sometimes people just don't want to hear the truth about a situation and most won't get it unless they, too, suffer from it.

The article is here: http://www.lupus.org/magazine/entry/your-right-to-hurt-and-be-heard

Read it if you know someone who is suffering from any illness. You might be enlightened.

My neighbor's peonies are blooming right now, but I just don't have the strength to walk outside and smell them. Peonies are my favorite flowers and they bloom in KY. For now I'll just enjoy their beauty from the window.

Ran across some pictures of the beach last night. I miss the beach and its beautiful scenery. There is nothing more serene or healing as a walk on the beach. Even though I can no longer feel the sand underneath my feet, I remember the combination of softness and firmness.

As I was flipping channels today, I paused on some show where a woman was saying how much she loved her husband and how she appreciates him for protecting her from the world. I realized this has never happened to me, not even as a child. My parents never involved themselves in my life. They just said "deal with it" when I came home hurt after being bullied and after those bullied years turned into twelve years. I never had a husband so there has never been anyone to stand between me and the world. I've had to deal with every problem that has knocked me down, crushed me, beaten me to a pulp, and almost destroyed me. No matter what, I always seemed to pull myself up after crying a sea of tears.

It would be so nice to have someone stand between me and the world, but I know this isn't a reality for my life. I cannot even imagine what that must feel like. The closest I've ever come is when I would go home at the end of a quarter from college. There was something secure about walking in the door of home and crawling into my bed. Something safe, something soothing. When my dad died, the last member of my family, that security died with him.

I've always been told "Home is where the heart is." I think I lost my heart after I lost my entire family because I nowhere has felt like home. I've also been told God provides a family to take you in when you don't have a family of your own. When I was so sick that someone had to come in to look after me, clean for me, etc., I learned a great deal about "families." I learned many families used the service so that they wouldn't have to visit their sick loved one at all. In fact, they just threw them away (this told to me by a director of the service).

Maybe this is why I feed stray animals and give what I have to those who have nothing. I know how it feels to be thrown away and alone in the world.

We live in an "out of sight out of mind" world that only thinks of you if you are of service to it. Makes me more aware of those like me who are no longer considered "of service" to the world. If only others would be more aware.


 

Thursday, May 8, 2014

Today I Want to Scream!!

Today I just want to scream!! Not sleeping through the night. Stressed during the day. My heart is beating out of my chest. I'm shaking all over. Is it because I'm coming off a medication I've been taking for 15 years? Is it because I'm also adjusting to a new medication? Probably.

I'm also frustrated. It is May and now is the time to find a new place to live if I intend to do so. I know I can't endure another winter in this apartment. My body cannot take another freezing cold winter in this place. I need an insulated apartment in closer walking distance to the downtown area of Wilmore. I've reached the point I can no longer walk from my place to the grocery store anymore. In the winter, my joints are too swollen to function. In the late Spring and Summer, the heat and extreme sunlight causes flares just as much as the cold.

Now is the time. Kids are leaving college and seminary to go home for the summer. For rent signs are going up. But with the new lease comes deposits and first month's rent requirements that I don't have. It takes every penny to live and with the small amount I live on, I still have to decide between food, utilities, or medications. I've cut meds in to two pills so many times over the past few months. I'm sure that hasn't helped the multitude of flares I've endured.

So it is now or next Spring. Sometimes I wonder why I'm still on this earth. Then again the kitties in this neighborhood would starve if I didn't get up in the morning. Seems the neighbor in the building two doors down keeps bringing cats over and "losing" them. I watched her son drop his cat last Sunday and not being able to catch it, just turned and walked away. I saw the cat yesterday at the end of my porch. She was waiting to be fed. Of course the grandmother who lives in the building of the child who lost the cat doesn't feed it. I can't bear to see an animal starving so I do. Explains where all of these cats keep coming from, especially the starving little cat that showed up several months ago. He ate for a solid hour. Now I can't shake him loose from my foot when I open the door. Wish he'd chase the birds off from the bowl outside. They keep eating the cat food! Tuesday morning he was eating out of one side of the bowl while one of the birds was eating out of the other side. Unbelievable!

Poor Rascal! He's had to endure my flared temper from the jitters and nerves. I just want to go back to my calm demeanor. He want me to go back, too. Since it has warmed up, I had the living room window opened. The family I share a wall with has two children: one four and one who is two. As I was dozing in the chair, the four year old ran by my window screaming to the top of his lungs. I think I'm still shaking from that one. He's been in a screaming habit for the past few months and the parents don't get that it isn't okay to do this in front of someone else's doors and windows. I'm sure they are use to it, but I'm not.

I can't believe it is May 8 and I'm counting pennies already. MORE stress! All of my medications came due for refills the first of the month. Selling things of ebay has been horrible. I list and relist things, get hits but no sales. So tired of worrying, but what am I going to do until the end of the month?!

Tuesday's experience at the hospital was something else. Went in, signed papers, went back, signed more papers, then went to the waiting area for the cat scan. One hour later, the lady from the cat scan area came out and asked why I had not filled out the "other" papers. I told her no one said anything else about "other" papers. If the woman behind the desk at that station had stayed at the station instead of walking around, I may have known this information. So I filled out three more sheeting of paper. One hour wasted.

She took me back, put in the IV, shot the dye in my system and did the scan. I then had to wait twenty minutes for a cd to take directly to the doctor. The lady at the desk went for another stroll for twenty minutes. I waited at the counter as a reminder I was "waiting" and had a doctor's appointment and had already lost an hour of time. I was there when the cd came through five minutes after my scan. So fifteen more minutes wasted while she strolled. It would not have been so bad but I had not eaten or had anything to drink since 10:00 pm the night before.

Finally out the door! Not impressed with the hospital. Thankfully I had a friend with me who was calm and kind. She diffused the situation.

I didn't wait long for "Conan O'Brien" the doctor (he really looks like Conan) to call me back, but did have to wait for him to finish with another patient. He has a habit of giving a compliment when he sees you. "I like that bright blue you're wearing." That was Tuesday's compliment. Last week it was "You have beautiful eyes."
Things like that don't impress me especially when I have an enlarged lymph node.

He pulled up the scan, felt my neck again, and said he believed it to be benign. Said for me to come back in three months and if it has grown we will repeat the scan and take a look. Problem is this: there were TWO nodes enlarged Tuesday, one beside the other. His idea is whatever is happening is coming from my spit glands. I've had a broken tooth for thirty years. Hasn't bothered me in thirty years. He said the root could be inflamed and I wouldn't know it. Said I should have it removed. Yeah, right. I don't have the money to live month to month, pay for food AND medicine, but I'll find the money to pay for a removal of a tooth that hasn't bothered me in thirty years. I informed him that my only sibling died of cancer. Nothing showed up in blood tests. They found it when they opened him to remove a kidney stone. It had already spread. Close relative died of cancer. Should be a concern, right?

He may be educated, but he is educated in ears, nose and throat problems. I just think this isn't his thing. I still don't understand why I was sent to an ENT doctor for this. I truly feel like this was a huge waste of time. They are still swollen, both of them. I'll just keep an eye on them and mention the situation to my rheumatologist next month when I see her. I've been sent to doctors for nineteen years. I've seen and experienced them all. After awhile, you tend to pick up on whether or not they know or don't know. It would be so much easier if they would just say "I don't know" and send you to someone who does instead of letting their ego get in the way.

I'm still screaming inside! Sometimes it isn't a good thing to have experienced so many doctors, so many medical tests, so many hospitals from being so sick. Sometimes it isn't a good thing to have experienced people who talk instead of do, whose actions do not speak louder than words. It makes me want to be sure my actions match my words. When I walk outside the door to feed the kitties in the late afternoon, I still think of Glen, the man who walked all over Wilmore. He suffered from Lou Gehrig's disease. He never let it stop him. Even though people passed judgement on his appearance, his inability to speak clearly, inability to take care of himself anymore, he kept going. I admired him for never giving up. Glen died last November, but I still think of how his life affected me - the woman who spends so much time alone, unable to walk short distances, living in a town that prides itself on Christian love. And I remember what Jesus says, "Whatever you have done unto the least of these, you have done unto me." Matthew 25:40

 

Tuesday, May 6, 2014

Out of Sight, Out of Mind

It was a rough Winter. I was sick most of it due to lupus flares. Because I was so sick, I spent most of it inside in bed so I could not attend the weekly Bible study I started when I moved to Wilmore. I missed it. The fellowship with the ladies was good. The teaching straight from the Bible, no fillers, no stories, no extra books, was great. But my health and doctors (and medical tests) kept me out this session. The only time I heard from anyone was whether I needed a ride to the study. I was greatful for the offer.

At the end of the study, one lady always takes it upon herself to gather money for gifts for the teacher and host. She calls all the members for donations. Last night my call came. I told her I had not been all session. It dawned on her she should asked how I was doing and the most important thing here was prayer. After I agreed, she said "blessings!" and hung up.

I had already known this group, too, was another "out of sight, out of mind" Christian gathering. I've been to far too many of them not to see it. When you're there, they care so much, love you dearly, will do anything for you. When you're not, you never hear from anyone, they forget your phone number, forget you are alone in the world and forget how sick you truly are. You fall back into the out of their sight out of their mind.

I've found so many churches to be this way with a cherry on the top: they add status to the mix. If you are "someone" in society, can get things done, have a role that can do something big for the church, have a title that benefits them, or are married to someone who has those qualities, you are the cherry on the top. No matter how many times you miss church, you are not forgotten. People check up on you because your presence would be missed, your status would be missed and your money would be missed.

If you do not have any of those things, you are invisible. Just add a cane plus an incurable illness(es), and you don't exist. I fall into the invisible category. It is an eerie feeling to see people look right through you at the end of a church service, but I've been there far too many times. It hurts more to go to church knowing no one cares than to stay home and worship God knowing He does.

At first they welcome you in with love, make you feel at ease, find out all they can about you and if they don't need what you can offer, you become invisible. I've worked in two different churches. I've sat in staff meetings, listened to "church talk," know what it is like on the other side of Sunday and know the business side of the building. This is not what Jesus intended for his ministry. In fact, if Jesus were to walk into a church today, he would be one of the invisible people, too.

I've been to four churches since moving to Wilmore. Three welcomed me in to a certain point, one made me feel like I didn't exist. When I came home crying, I knew it was time to stop.

Thirty one years ago, God opened a door for me to attend Asbury College, now University, in Wilmore, KY. It was the best time of my life. I graduated with a degree I worked so hard to achieve. People were loving and kind. They helped each other when there was a need. Even Wilmore people helped out when they heard of a need.

After my mother died, I returned to Wilmore to heal. I lived with a friend in a furnished apartment downtown. She soon graduated and was moving to Lexington. I had no furniture, but wanted to move with her. Within a few weeks word got out of my need. A family in Wilmore provided me with a full bedroom set free of charge. God always provided through the love and kindness of Wilmore residents.

So what has happened? Has this small loving town become so like the world that they don't care anymore? Or do you have to be part of the college and seminary in order to receive love and help? I wonder.

It breaks my heart.

I have a need. I need to find a warmer place before Winter. Kids are moving out now and places are opening up, but in Wilmore apartments and rental houses are found out by word of mouth. I don't know property owners. I hear "advice" but no one offers to help me find a place. I don't need advice. I need someone to help me find a place. Otherwise I'll be freezing again next winter. "Take my hand and help me!!"

Then again, I don't have deposit money until I move out. But you have to have deposit money and first month's rent in order to sign a new lease!  STRESS!!

You know, celebrities complain about this and that, but they don't have to worry about stuff like this.

I'm heading out the door in an hour to go to Lexington for a cat scan of my lymph node. I checked it myself this morning and found that two are swollen now. May have to argue with this doctor for a biopsy. If he can't do it, he can send me to someone who can. My brother died from cancer. It didn't show up in blood tests. They found it by accident when they took out a kidney stone. Was too late then.

I feel so stressed today. All I can say is "LORD HELP ME!!!"