Tuesday, July 19, 2016

The Final Events

This is one of the best film explanations of the last days I  have seen. Strictly by the Bible. If these scary times are causing great fear in your life, it helps to know why and what is coming.

Monday, July 18, 2016

Blood Test Reports

Received a call from my rheumatologist's office last week. Said my kidney function numbers were not great. But instead of saying if I had any problems to call them, they said this, "If you have any pain or problems with your kidneys, call your local MD." 

I've been diagnosed with systemic lupus for 22 years now. My rheumatologist in Dothan would have put me in the hospital and monitored me for this issue. The rheumatologist here told me to go to another doctor. What's wrong with this picture?! Sad thing is the local MD would have asked me if this wasn't something the rheumatologist should deal with. 

As far as health care was concerned, I was a fool to move from Alabama. Now I can't afford to move back. 

Live and learn.

Tuesday, July 12, 2016

Slowing to a Crawl

As the heat, humidity and dew point go up, and the rain increases, I slow down to a crawl. Weather beats me up. Lupus flares. Today I feel so sick. Just can't function.

Last week I saw my rheumatologist. She spent the time telling me I need to get a plaquenil test from the ophthalmologist. I tell her she needs to call in an appointment with a referral and I'll go. That's as far as it gets. Same old story every time I go. I never get a referral. I never get an appointment.

The receptionist took my vital signs. Did my blood pressure and heart rate. Said they were short handed, yet they have a physician's assistant on board. She sat in on my appointment saying she'd never met me before. However, she sat in on my appointment three months ago. I will never get use to a doctor who doesn't care.

After the two second exam, she asked me questions before sending me for a blood test. As usual, she asked if anything changed in my family's history. I told her no that my family is still dead.

When I went in for the blood test and urine test, they left me sitting there while they complained that I didn't give them enough urine. I gave them all I had. I sat there listening to them complain before I asked if I could go. Of course, they didn't have a clue I had overheard them.

I hate being a patient in today's medicine. I've grown so tired of wasting time in doctor's offices only to get a five minute "who cares" exam. So tired of the year after year pill mill. They keep juggling meds and the cost keeps going up. I'm just tired of it all.

If only they could feel the pain and suffering their patients feel. What a different world it would be.

Friday, July 1, 2016

And Some Wonder Why

I spend a great deal of time alone. I don't have any family left to call, or visit, or to fill my life. They have died. I've had to learn to be alone, to adjust to finding ways to have a fulfilling life. When I was diagnosed with lupus, I lost many friends. Say it is due to ignorance or fear of catching something you simply cannot catch, but people left. People who use to encourage me, include me in their lives, etc. They simply didn't want to deal with a sick friend. And it hurt me.

When this disease took away my ability to work, I lost more friends.  Even though I worked in a church, once I left it was as if I died. In a way I did.

I've always had bad experiences with neighbors. They were either judgmental, better than me, or spent more time involved on the wrong side of the law. I never involved myself with people like this. I decided I beat myself up enough without letting others do it for me.

So when I returned to Wilmore, I had hoped to find a better quality of people...those who were loving, kind, accepting. Instead I just moved locations. People are the same wherever you go.

But I pushed on. Always being kind and friendly to my neighbors, Doing unto others.

Tonight I stepped out onto my porch to see the neighbors across the street having a July 4th cookout. They had invited the people next door to them, the ones next door to me and the older couple on the other side of me. In fact, I was the only one who had not been invited. Quite frankly it hurt my feelings. I would probably have turned them down, but it would have been nice to have been asked. Quite obvious when you're the only one left out.

There was a sweet couple in the house next to them a year ago. She decided to have a neighborhood barbecue and invite everyone. She walked from house to house inviting everyone. I went to that barbecue even though I didn't know them. Her hospitality was kind. They moved last summer.

I never did get to know those people across the street from me. They are missionaries and have been gone for a few years before moving back last year. Yet they never attempted to get to know me either. The husband always spoke at a distance. But what shut me down was the episode of a small child who was deliberately hurt in their presence. It was last summer. I had walked outside to sweep the porch when I noticed the little girl down the road standing near the street. The girl who lived there had stood up with a large stick in her hand obviously threatening the small child. I was almost to the end of the steps when I saw the mother stand up from behind her vehicle. She had been witness to what had happened and didn't say a word to the small child.

This small girl rides her bike all over the neighborhood. She finds someone to play with every chance she gets. Never rude. Just lonely. When I saw what this family did to this girl, I decided then and there they were treating her this way because of who she was. A poor child who lived in a trailer down the street. Their actions and the mother's lack of action told me all I needed to know about their lack of character and compassion.

Having worked in two churches in my life, I've seen the other side of what goes on. How ministers and leaders mistreat, judge and make fun of people they don't feel are their equals. I guess missionaries are not immune to this type of behavior. I find myself turning away from people in the ministry, preachers, missionaries, etc. because they are just being paid to do a job. Little do they know these people they laugh at, turn away from, make fun of, etc. will be the souls in Heaven.

So I have mixed feelings. It was obviously a deliberate action to leave me out of the loop. Perhaps they thought I was not good enough for their group. Then again, how would they know? They never took the time to get to know me.

Across the street they see someone who has to stay inside most of the time because the weather affects her health so greatly, but they don't know this. Every thing I do is a struggle, from taking out the trash, to attempting to cut the bushes out front, both of which are observed by the neighbors across the street. Yet no one runs to help when I struggle. Sort of like Dothan. I always thought if I passed out in the front yard, no one would help me. I just never thought Wilmore would be so much like Dothan. If you are not useful to someone, they're not interested in knowing you. I guess it must be a world wide sentiment.

And I have no doubt another reason I am left out is I have never been married. You'd think that odd, but couples don't tend to invite single women to events. I'm sure their judgment includes much speculation even though there is nothing to speculate about.

If they had taken time to know me, they would have found out that I was engaged twice in my life. And I'm thankful I never married those two men. They would have found out I spent most of my childhood, teens, twenties and thirties taking care of sick family members until they died and working full time. They would have found out how deathly ill I became after my father's death, the last member of my family, and how most men wouldn't consider spending a lifetime with someone so sick.

But they never did. Instead it was easier to pass judgment and consume themselves with their own families.

Some wonder why I am the way I am. Add up death, disease, loss of health, etc. Add in how people treat others who find themselves different and not at their own doing. A soul can take only so much without it affecting their life.

So if you wonder why someone you know is the way they are, consider my story. And be kind to them. You have no idea where their life has been and what kind of weight they are struggling through.

Wednesday, June 29, 2016

Holding my Breath

I realized today that Friday is July 1st. We've almost made it through one month of summer. Not being a fan of heat and humidity (thanks to lupus), I have to spend the majority of my time indoors. I am amazed at how much this disease is affected by the weather - rain and cold cause my joints to swell, heat and humidity wipe me out so much I can barely stand it (plus the multitude of fevers!), and just the jump from one extreme in temperature to another causes a flare like none other.

So how do you make someone understand when you're sick, you're sick? I have been sick so much the past few weeks from the flares caused by my colonoscopy and diverticulitis. Going out in the heat makes it worse. I just can't seem to bounce back and that makes life tough for someone who is alone.

This past weekend an old college friend called me every day wanting to go to lunch or do something. I tried to explain to him how bad I was feeling, but he simply did not understand. I can't blame him for that - he's never gone through this before. I finally pushed myself Saturday afternoon and went to the college reunion barbecue since it was inside. However, Saturday turned out to be a hot one with triple digit heat index. By the time I reached the building, I was so wiped out I could barely stand. It was nice to be able to sit and talk with my friend for awhile, but once we had dinner I was back home in bed. Not only did my joints swell, and my body swell, too, but I had a headache that was unbearable. By the time I could actually settle down to sleep, fireworks exploded outside my bedroom window. I had forgotten the college did fireworks as a celebration to the end of reunion and my place is just around the corner from the field where they went off. So I pulled myself up and sat in the living room with Little Bit since she was so jumpy from the noise. Poor Rascal was already under the covers.

For the past few days I've been unable to get out of bed except to feed the kitties and myself. Nausea and vomiting added to the already wonderful experiences I'd had the past two weeks. A friend told me about her friend who was sick this past weekend. She felt so sorry for her because her husband wouldn't do anything to help her. It was as if she were totally alone. All I said was "I understand how she feels." No matter how much someone knows you are sick, they just don't get how serious the alone part is.

I find myself not wanting to go to gatherings anymore. The reality of life hit me a couple of years ago when it dawned on me the college friends I knew and loved so well were not total strangers to me. People grow up and move on. After all, it has been over thirty years. So I really don't get too excited about seeing people once again. Too, it is hard for me to sit in a group of people surrounded by their families when I am alone. It just magnifies the solitude way too much in my own life. I've grown accustomed to being alone. In fact, I like it. But when you're thrown into a group of people it is hard to readjust to being alone again on a day to day basis.

I've struggled a great deal with this horrible disease. It has taken so much of life from me. But I'm thankful for the small things I can still do even though it takes me so much longer to do them. What other people take for granted, I have to work extra hard to accomplish. Small things to some like washing dishes, vacuuming the floor, or even doing laundry take me more than a day to accomplish and that's if I'm doing well enough to walk and balance myself. I can't count the number of falls I've had this past year. Each one has left me with more areas for lupus to attack.

I still won't let it take the joyful moments I have in my life. I've learned to appreciate small things. I've learned that no matter what good intentions people have, they still won't understand when I explain I'm use to being alone and not having anyone to help me. And I've learned people will never understand unless they, too, experience what I go through on a day to day basis. I appreciate moments I can get out of the house and have a change of scenery. Those times are rare. NEVER ever let anyone make you feel bad for having to measure out your strength and abilities just because they don't understand. Sometimes it isn't worth the trouble of having to repeat it over and over again.

So I'm holding my breath until this hot summer is over. Looking forward to a cooler Fall. Wishing for a cooler winter, too.

Tuesday, June 21, 2016

Yikes Already!

Fevers have set back in again. Sunday my abdomen swelled twice its size. Fevers went up to 103 degrees again. Held on five or more hours and finally broke. Took me long enough but I finally figured out this was diverticulitis flaring. I've been having flares of it since I started the prep for my colonoscopy two weeks ago. The prep and the procedure both sent me into an inflamed system.

I was so weak Sunday night I could barely stand. Every movement I made was magnified ten times. I did fall into the bathtub when I finally made it to the bathroom. Bumped and bruised, I crawled into bed after taking ibuprofen. Five hours later I broke the fever and soaked the bed. My hair was soaking wet.

My water hose decided to explode Monday morning as I was washing off the front porch from the bird poo. They have decided my porch is a great place to rest and grab some cat food while they are there. All of a sudden a balloon appeared in the center of the hose. It exploded all over me. No rescuing that one. So I ended up going with a friend to get another one. Her air conditioning is out in her car and Monday was an especially hot day. So I spent the rest of the day in bed in front of a fan.

By Tuesday morning my joints were swollen and I was completely nauseous. Welcome lupus flare. One thing tends to set off another and add the extreme heat you get a good old lupus flare. Any extreme weather - rain, heat, cold, etc. causes my body to revolt. Seems to be more frequent these days. Although I'm use to having to take care of myself, I do feel sad there is no one there when I'm terribly sick. I also hate the fact my doctors don't seem to care about anything when I tell them. Therefore, I will suffer at home before I call them or go to the ER. I wonder why bother?

I must admit the fevers have been horrible. Just hoping somewhere down the line they will subside. I'm either freezing to death when they peak and have to find a sweatshirt or I'm soaking wet from humidity, heat and the new blood pressure medicine (one of the side effects). There has to be a middle ground somewhere, but for the life of me I've not been able to find it for years.

My college reunion is the end of this week. Temps are suppose to soar in upper 90's. Needless to say, I won't be walking in that heat to attend. Just praying God sends some good thunderstorms to cool down the air. It has been terribly dry here. Although the rain is miserable on my body, so is the heat. So you pick one or the other to endure.

I can't help but wonder what digit does the thermometer reach before I am forced to head to the ER?

Monday, June 13, 2016

Such a Beautiful Post

I wanted to share this. Just watch to the end:



 Remember no man knows the day. Only God does:

"But about that day or hour no one knows, not even the angels in heaven, nor the Son, but only the Father."

Matthew 24:36